Celebrating Inchstones

Sickie's Part II

2012-02-16T22:23:00.001-06:00

Asa's bug has taken out another victim! Gracie is sick now. Asa had fever Monday and Tuesday. Gracie's had fever Wednesday and today. She missed school Wednesday but after her medicine kicked in she was feeling pretty good. I sent her to school today and she made it until 10am before she called to come home. Asa is fever free but they both just lay around on the couch today. Hopefully tomorrow will be back to our regular routine! Asa missed school all week and Gracie has missed 2 days.

Asa's GI appointment went well yesterday. He is 33 lbs and 34 1/2". That means he's gained a few pounds in the last 4 months. I'm not really thrilled though because it's only because he's on Elecare and only eating a tiny bit of real food. If he is eating food then he looses weight. What's better....a solid weight and nutrition or a more "normal" diet? We added an afternoon dose of Prevacid a month ago and since then Asa's not been nearly as pukey. If he starts that up again he'll need a scope. Hopefully that won't be necessary though! He also had some blood taken to check for some vitamin deficiencies. I doubt they'll show anything. It doesn't hurt to check. Easy for me to say! Asa said it hurt plenty! :)

A funny from tonight: Asa was sitting in a clothes basket playing with a NERF gun with Cade. He started gaggy and puked. This reminded me to tell barry about the GI appt yesterday! I told him if the puking picked back up they'd scope Asa. Barry said he doesnt think Asa needs a scope. Cade piped up with "Of course he doesn't need a scope! He can't even handle a regular gun"! Hahaha!

Sickies

2012-02-13T22:25:00.001-06:00

Asa is a sick little boy. He started running a fever Sunday morning and had a cough. As the day went on so did the cough, to the point that he started puking. Thankfully that didn't last long and he hasn't got sick since Sunday night. He is still running a fever, coughing and just overall puny.

He missed school today and will miss tomorrow since he's running a fever tonight. Wednesday he has a GI appt so he'll probably miss that day too. I'm glad we have the appt so at least we can get vitals and they'll listen to be sure he is ok. How often does it happen that you already have an appt and then get sick?!

Gracie has not been feeling great but she's not had fever and she is fine when she needs to be but is terribly sick at chore time! Since Asa is sick she's been feeling worse though. She's been taking her temp several times a day. Last night....Sunday night, school day eve....she took her temp again. She went to the bathroom and came out several minutes later with a temp of 104! Yes, that's correct! One hundred and four degrees! 1-0-4! I really tried not to laugh because obviously she was not running a fever that high. She was wrestling with Cade 5 minutes before! Sadly she still had to go to school today! She's such a mess!

Hopefully everyone is on the mend and the germies are banned soon!

Adventure boy

2012-02-04T18:02:00.002-06:00

Saturday was a nice day and we took Cade and Gracie and some friends to our church gym to shoot hoops. Asa had no desire to play inside so we headed outside to the parking lot. He loved riding his car down the slope and eventually found the water puddle at the bottom of the slope. I never realized it but he's never played in a water puddle before. He had a blast and I let him get his shoes and braces soaked!

At some point Cade came out and played a while. A few minutes later he said "hey, where'd Asa go"? We had been talking and didn't even notice that Asa was gone. But where did he go? It's an open area with no corners he could hide around. And we are in the boonies, in an empty parking lot. He was just gone! I was wondering if the rapture had come! The only place he could have gone was.....down in a deep drainage ditch!! Y'all my heart stopped until I looked over the edge!

Asa was perfectly happy! He never screamed or cried. Apparently he just feel in and started playing in the leaves! Thank goodness for leaves or he'd been in water and mud!

Cade jumped in to help him out but Asa would push our hands out of the way and grab more leaves! He finally sat up but still didn't want to get out. He also enjoyed his warm bath at home after we finally got him out!

Here's a video if you've got 4 minutes to waste!

Couple of videos

2012-02-02T18:26:00.000-06:00

Asa likes to wrestle. If you lay in the floor he tries to climb all over you and kicks like crazy. And he kicks hard!!! Usually I'm the one he is wrestling with but I got this video of him and Cade. They'd been at it while so he was a little worn out by the time I started the video. And for some reason Asa loves how rough Cade is with him. BOYS!!!

Again I'm slow with the video! This was much funnier when he first started. Asa rarely mimics our sounds but for some reason he tried to mimic Cade's burp!

Asa spent a great deal of our Target shopping trip entertaining himself by sticking his "fidget" in the shopping buggy and pulling it back out. He cracked up when it got hung and would laugh and laugh! I just had to stop and video because life is short and every laugh should be remembered!

After this got old Asa wanted out of the cart and wanted to push and walk. He ended up holding the buggy with his right hand and holding my hand with his left hand. He walked from the girls clothes section, in front of the birthday cards, took a left and walked all the way to the toys at the back of the store! Then he ditched the buggy and held both of my hands while he made a lap around one aisle of the toys.

And then he had school! What some exercise!!!

School update

2012-01-27T22:35:00.001-06:00

I hesitated to post until now so I didn't jinx anything but....Asa made it a whole week at his new school! Not only did he make it, he LOVED it! He went in class everyday with no problems. His lunch box was empty every afternoon. He went on the accessible playground. He had circle time with his friends. He had a great time!

And he did all of this without getting sick! Well, at least not at school. He still got sick at home a few times. I do think it's decreased since we added an extra dose of Prevacid. He had a nurse in the room 2 or 3 days but didn't need her.

Asa has 2 of the same therapist that he's had the last 2 years. And the nurse was the one from his first class. I'm glad these ladies are watching after him. I thought he liked school but they could verify that he really was loving it.

And I'm thankful for the new friends at school. Plenty of teachers and kids are quick to say "Hi, Asa" as we walk down the hall. Today several kids commented on his wheelchair. They had been studying transportation and a wheelchair was in one of the books. One of the kids said "he's such a cute baby" and the teacher told them that he isn't a baby but his muscles just won't let him walk like them so he uses the wheelchair as transportation. I just thought this whole exchange was pretty sweet. Asa just sat and watched the kids as they used him as a lesson plan.

Oh and just in case you think Asa doesn't understand because he doesn't talk, let me tell you this... He has been hanging his feet off the side of the foot plate on the wheelchair. He isn't dragging on anything but it makes him slouch down. So I was pushing him down the hall and said "Asa put your feet back on your foot rest". And he did it! I admit, I was impressed! Who knew he could get such a sentence. If I'd been trying to get him to follow directions I would have said "asa pick your feet up". That he can follow, but I used way more words than that and he still got it!! Such a smart boy! I know so many good things are in store for him!

Weekend update!

2012-01-22T19:31:00.001-06:00

On Friday, Asa and I visited his new class at his new school. I don't think I told y'all about his class. There was a few choices of teachers. I looked at 2 classes and then the principal mentioned a third teacher. Her name is Birdie. This rang a bell with me. I think I blogged about it before but I can't find it now. Anyway, many many moons ago I was in line to checkout somewhere. I'd guess Walmart since that's where I spend 90% of my free time. The lady behind me asked about Asa and his special needs. Turns out she was a special Ed teacher at the school he will be at now! I had forgotten all about it until I heard her name again. We walked down to the room and guess what she had....a huge cardboard box playhouse! Right up Asa's alley! So Asa and I hung out in Mrs Birdie's room Friday afternoon. I answered questions and the nurse from the Asa's first class stopped by to train the new teachers on draining the feeding tube. We kinda hoped he'd get upset and need draining so we could show them in real time! Instead Asa did great! He loves the room and the new toys. He even sat beside one boy and rubbed his head! The other boys were so sweet too. Very calm and well behaved. I hope Asa picks up this behavior! And listen to how great these nurses are...even though Asa really doesn't qualify for nursing they are supposed to go tomorrow and be back up if his new teachers need it. We only stayed 2 hours Friday and he'll be there 3 hours from now on so hopefully he can make it! Here's a few pics I snapped.

After school we kidnapped Anna's boyfriend, with his parents permission, and surprised Anna with a birthday trip ice skating! We had fun but it's hard! Lol!

Gracie and I were trying to show how tired we were after 2 hours!

And this was what Gracie and I saw Saturday morning when we heard noises in Asa's room and went in to get him out of bed! With the light off it was dark in his room but we flipped the light switch and saw that Asa had gotten out of bed and cruised to the end where his toy shelf is! He was standing so tall and rocking the shelves.....time to tie those down! Gracie I were both surprised and we ran off in opposite directions to grab cameras! he was happy to pose for pics! He's gotten out of bed before but mostly just to slide to the floor. He has never roamed around before. He's never even cruised this far on anything!

We are looking forward to a new week full of firsts!

Assistive Technology

2012-01-19T22:32:00.001-06:00

Asa had his appointment with RJ Cooper today. He did his Asa usual. He did really well but then lost it a little but not too badly. I just thought we were going to see some equipment but the little chat at the end was right on! And I think RJ might could fix those fits if he was in charge for a minute! What a patient, observant man! I saw him work with several kids with varying needs and he just reacted to each ones needs seamlessly! Pretty cool since he only met them as they came into the room with just a little written background.

It's a 12 minute video so you casual observers may not want to watch. We missed a few minutes at the beginning. Asa had an iPad with 4 choices...tissue, music, book or tickle. Asa choose tissue which was supposed to be a non desirable object. Asa likes tissues though so he didn't mind his choice. Eventually RJ helped him choose music and he did a little dance with him. This kinda pushed asa over a very fine line. RJ worked thru it and asa made some more choices but never really got comfortable. He did well though! The finally directions were if we did these choices for 10 minutes, twice a week we'd see a different kid in 30 days! His program cost $30 so I haven't jumped on it just yet. and after I take Asa out if his chair his bottled up energy comes blasting out! I have no idea where all that jumping came from!

Anyway, watch at your own risk! :)

Emotional Day

2012-01-18T22:39:00.001-06:00

This was an emotional day for me. First of all I dropped Asa off at his last day at his old school and with his very first public school teachers. When Asa turned 3 and I was so nervous about leaving him with someone these ladies were the perfect fit! The class was small, they gave him all the time and attention he needed to adjust and grow, and I really couldn't have asked for a better fit! I'm excited for Asa's growth and development but I'm so sad to see this season pass!

After I dropped Asa off I headed to another school to watch a special presentation by Assistive Technology developer, RJ Cooper. He has developed apps, programs, switches, buttons, keyboards, etc that open up technology and communication to kids and adults with all kinds of disabilities. I really thought it would be kinda dry since most techy stuff is above my head! But it was amazing!! Truly amazing! Mr. Cooper was so good with the kids. He was so funny and personable.

He worked with one boy who could only use his foot to tap a button but that was all he needed to give Mr. Cooper a buzz from a connected massage toy. The little boy just lit up when he realized his foot button had made this silly grown man jump and hop around!

Then he used a head switch with a little girl diagnosed with Rhett's. One of her choices was "music" and he asked her therapist what kind of music she preferred...rap, hip hop, rock, heavy metal. The therapist replied just kiddie music and Mr. Cooper said that wouldn't do! She was 12 and she needed teenage options! He picked Hammertime! It only took once or twice before the little girl realized she could play the music by moving her head and she gave that button a workout! Again, she liked watching Mr. Cooper dance!

He used a 2 choice touch screen program for a girl with autism. She could request "goldfish" or "make friends". The "make friends" option was a big deal for her and just watching him introduce her to new people was eye opening. I learned a lot today. He said to be specific when cheering these guys on. Don't just say "good job" add why your proud...."good job by choosing to make friends". He also said that although this technology is great it isn't a baby sitter. You can't just sit a kid in front of an iPad and expect them to understand how to get their thoughts out! It's still work! Greeeaaatt!

I'm excited because tomorrow Asa will get to work with Mr. Cooper! I'm glad I went today to observe because there was tons of cheering and that's not how Asa rolls! I've realized asa is very intune to our facial expressions and tone of our voices. A huge grin and soft "great job" work just as well as cheering for a reward. A frowning face and low voice upsets him as much as yelling does. This makes it very hard to get onto the other kids!!! But that's another blog post! Tomorrow should be fun!

Oh and there's some YouTube videos by RJ Cooper if you want to check them out! Maybe I'll have one of Asa tomorrow night. Or I'll be too busy playing mom to video!

What is valuable?

2012-01-13T22:39:00.003-06:00

I've read a very heartbreaking blog today. It's made it's way around the Facebook pages of my friends with special needs kids. If you don't want to take the time to read it right now I'll give you a brief rundown.

--The parents of a child named Amelia, who has a rare genetic condition and was in liver failure, had a meeting with her doctor and a social worker to discuss the options for a liver transplant. The family had already decided they'd all be tested and since it was a large family, one of them would donate. But that was not an option listed on the forms presented to these parents. The highlighted portions said "mentally retarded" and "brain damage". In shock, the mom asked if she was understanding correctly. Was the doctor saying little Amelia could not get a transplant because her condition has caused "mental retardation"? He said "yes"! It gets even more outrageous and I hope you will read the post. This could certainly hit close to home for many but in all honesty we are ALL in danger of this kind of discrimination. Any of us could be a single car accident from "brain damage".

If you read the blog are outraged you can sign a petition at change.org. If nothing else, share Amelia's story.

But about the time I begin to wonder if we are really the type of society that even in a profession that is sworn to "do no harm", we can so easily write off the value of a human life, I find this link on Facebook that makes me tear up....no easy feat! It's an article about Tim Tebow. Surely you've heard of him. If you don't know him from football you've likely heard how is faith in God is getting him tons of attention....both good and bad. I didn't really buy into the whole Tebow praise until recently. I thought he was a faze and would fade away....plus he was a Gator! The more I hear about his history though, I'm pretty certain that his faith will still be strong even after football fades away!

If only our world was full of people who saw value in ALL people!! I want to be that kind of person. I also don't have the time and space in my life for those who can't see that value.

We did it!

2012-01-12T22:51:00.001-06:00

Before I get to my meeting with Asa's school I've got to tell you about an amazing thing that happened this afternoon. Many of you will see no significance in my story but many of you will!

I'm pretty sure that I haven't used a public bathroom since Asa's been born if I've been out alone with him. I've tried a few times but the flushing terrified him. More importantly, there just isn't an easy way to do it. I can't hold him, I can't sit him on the floor and most stalls aren't big enough for a stroller/wheelchair/buggy.

Today though, before we changed at aqua therapy, we went into the large family bathroom. I stood Asa against the wall near the door where he stayed while I did what you do in there! He has the ability to stand there propped but not the confidence to shuffle down the wall to get into something! It was perfect! I did think he was gonna take his first steps when I started rolling out the TP! That really cracked him up and he wanted to play so badly!

Ok now if you are done hooting and hollering with me about the potty I'll tell you about the meeting today. I think it went really well! Asa's teacher, OT, PT and SLP were there to speak up for him. We reviewed his history and his present skills and the need to challenge him more. We ended with the plan for me to visit tomorrow afternoon and see the 2 classes that seem like the most likely placement. I'm so thankful that Asa's OT and PT go to both schools so they can give the most accurate info. Asa will visit therevwith me on next Friday and then he'll start full force on the next Monday, January 23.

The class will have 4 other kids. They will go the lunchroom, art, music, plus his therapies. I have some reservations about such a busy schedule for the little guy but I think after some adjustment he'll love it! I just hope the teachers are ready for him! He is used to giving the schedule for the day not following someone else's!

I'd really like him to go ahead and start next week but they are out Monday for MLK, Jr day. Then Wednesday and Thursday there is a big conference with Assistive Technology. RJ Cooper will be seeing several kids from the area to show off some great special Ed tools! On Thursday afternoon Asa is going to be one of his students. I'm pretty excited and I hope Asa behaves himself! A couple of times he's really preformed for crowds but just as many times he's had meltdowns. I guess we'll find out next Thursday!

Thanks for all the prayers for today's meeting. I had such peace going in there! And I have a lot of excitement for his next big step!

Same ole same ole

2012-01-09T19:00:00.000-06:00

I hate to not blog but everyday is about the same here. Not that I'm complaining!

I wouldn't mind if Asa's GI issues took a break though. We spend almost every afternoon with him very sick and miserable until he pukes or we drain his belly. We've used Farrell Valves but if he eats solids the stomach contents clog the narrow tubing. I emailed Vandy and asked for urine drain bags on the recommendation of several friends. Instead of calling them in they want to look at why he gets sick. Greeeaaat! I wish they could figure it out but so far I've been describing the same issue for 3 years and I get zero answers! Anyway we are going to add an afternoon dose of Prevacid. Do I sound skeptical?! I didn't have to drain him this afternoon.....I did it before 10am! Not a great way to start his day.

He has also lost some of his gross motor surge. He won't get out of bed in mornings on his own or walk very much. At school they said he wouldnt even walk today in the gait trainer. I try not to get my hopes up when he does a new skill because then I get all disappointed when he stops.

This was after school today. I love his recliner so he can nap in it instead of on me!

I love how he props his head up on his hands. He's been doing it a lot lately. I hate that he still has a paci but if he doesn't have one then his hands are in his mouth. It's pretty gross to think about the germs he's taking in or the drool running down his arms. So the paci is the lesser of the evils!

I'd appreciate your thoughts and prayers on Thursday morning. I have a meeting at Asa's school to talk about moving him to another class. I love his class, school, teachers and therapist so much but he doesn't have any peers to challenge him. He mostly sets the pace of the class and he can benefit from a more structured class where he learns the rules and doesn't set them! In my mommy heart though, I just want him to stay where he is and be coddled and loved on! I just have to keep in mind that I want him to grow and learn and thrive. I just hope I can be a good advocate and get all his needs met at the same time I push him to grow. I hate to start a whole new routine over. I'm concerned about germs from other kids. Will he be able to keep a paci or will he be gumming toys other kids gum on? Will he be able to have a calmer, quieter class that won't stress and startle him? Will I be able to pick him up at 2 instead of 3 like I do now? Will his room be too warm? Can he keep a drink with him? Will someone feed him since he can't feed himself? Oh see there I go worrying again! See I need prayers for Thursday! Thanks!

A Brand New Year

2011-12-31T22:52:00.001-06:00

There's less than 2 hours left in 2011. My Facebook is covered with folks wishing away 2011 and welcoming 2012. I can't say that I'm sad to see 2011 go. In fact this year has been a pretty peaceful year for me. Asa made some steady developments and everyone's been healthy. I've felt very, very blessed.

Many of our mito friends have not had such a peaceful year. At this moment 2 little boys are very sick in the hospital. One little boy is home on hospice care and almost didn't make it to Christmas. Many friends spent Christmas or the days leading up to Christmas dealing with major medical issues. There was several, too many, that spent their last year on earth in 2011. Yes, 2011 has been a hard year for the mito community!

It has also been a year with bright spots. There's the new drug trial EPI-743. In 2011 the trial was opened up to many more kids. Several kids whose blogs I follow we're accepted and started the drug. They've all had success, some mild but others great! And none have had bad effects!! It is really very promising! I can only hope and pray that this really turns into a decent treatment for mito patients. They all deserve it!

My prayer is that no matter what 2012 holds for my family, that I have my eyes open for God's plan and that I praise Him in all things!

Happy Christmas

2011-12-29T22:06:00.002-06:00

We've had a great Christmas and a terrific break! Barry has been off work since last Thursday. We've all enjoyed our "staycation"! We've stayed up late, watched movies, eaten junk food and stayed in pjs all day! Its been great!

Santa brought Asa a handy red recliner. He likes it! I love it!! He hasn't really used it during a sick time but I think he will.

Santa brought Gracie a hunting bow and target. She's been asking for one for 2 years! We don't hunt so she's just using it for target practice. She's pretty good too!

She practiced all day and even packed her own stuff up. My dad put Asa in the wheelbarrow and he happily watched Gracie for a looong time!

Anna got clothes.....lots of clothes! And Cade got an iPod touch. They're just too big for pics and blogging!

I saw this cool idea on Pinterest and knew Asa would love it! Barry's parents got new recliners for Christmas and Asa got a happy box! :-)

He even talked my mom and dad into playing in his house. Moma would try to sit up and talk to me and Asa would push her back down. Daddy helped him make it even more festive and Asa was trying to wrap the lights around himself!

Asa loves lights and I bought a kit that has adapters for 3 outlets and a remote. The remote turns on or off whatever is plugged into outlet. We plugged in a lighted angel in one, a string of lights in one and a hanging string of lights in the 3rd. Asa could turn on and off random lights and he LOVED it! He would crack up when he made it work. It was adorable! Then he lost the remote! We looked in every nook and cranny and dug in the garbage but it is nowhere! Unless he put it in a gift bag under the tree and we didn't notice. I still haven't given up all hope but it is looking like its gone!

Asa also got a Hot Wheels Wall Tracks. Its a Hot Wheel set that attaches to the wall. The first time I hung it too high. it was made for a stander. I had to adapt it since Asa is a sitter. He loves it! I mean he is laughing eveytime and will play for 15 minutes at a time....and alone! He even put a ball in it all by himself. Pretty creative! Enjoy!

Christmas Eve!

2011-12-24T23:30:00.001-06:00

I sit here with 1 hour left before we leave Christmas Eve for Christmas Day. Cade and Gracie asked to go to bed at 9pm. At 10:30 I got up to get "Santa" ready and found Gracie sitting on the stairs! After a pep talk (and a tiny dose of benedryl) she headed back to bed. Her alarm clock is set to go off at 5am. Not because I want them up that early but so they don't come downstairs until 5am!

We had a great Christmas Eve together. Gracie and I made cookies this morning. After they cooled all the kids decorated while Chrisymas music played. Anna, Cade and Gracie decorated while Asa ate broken cookies and licked icing off the spreaders when they finished with them. I cooked at the stove and Barry watched football. My heart was full!

We ate supper and opened gifts with Barry's family. I can't even tell you how good Asa did! It gets noisey and busy and over stimulating but Asa was awesome! He had a few,moments of clinginess but he settled again and would play. The kids had a blast, of course!

Tomorrow morning we will have "Santa" and our gifts. Then we'll go to church. We'll have lunch and gifts with my family after that. I'm pretty sure a nap will be in order too!

I'll leave you with the Word we've read numerous times in the last month:

Matthew 1:18-25 ESV

Now the birth of Jesus Christ took place in this way. When his mother Mary had been betrothed to Joseph, before they came together she was found to be with child from the Holy Spirit. And her husband Joseph, being a just man and unwilling to put her to shame, resolved to divorce her quietly. But as he considered these things, behold, an angel of the Lord appeared to him in a dream, saying, "Joseph, son of David, do not fear to take Mary as your wife, for that which is conceived in her is from the Holy Spirit. She will bear a son, and you shall call his name Jesus, for he will save his people from their sins." All this took place to fulfill what the Lord had spoken by the prophet:
"Behold, the virgin shall conceive and bear a son,and they shall call his name Immanuel"
(which means, God with us).
When Joseph woke from sleep, he did as the angel of the Lord commanded him: he took his wife, but knew her not until she had given birth to a son. And he called his name Jesus.

I pray that you feel the love of our Savior during this holiday season and that you see His blessings all around you in the New Year!

Waiting on videos

2011-12-20T23:16:00.001-06:00

I've been thinking I would take videos for this post but so far that hasn't happened. I've got to make it a priority though because I don't want to miss these milestones. Asa is doing some great gross motor work lately!

A few days after he started aqua therapy my dad gave him an adult walker and Asa took off with no one holding him!

Last week I put a set of Walking Wings on him and he took off with no one touching him! In case the link doesn't work... its a vest (?) with straps that come up at the shoulders so parents hold the straps while the baby walks without holding hands. This is the first time Asa would walk without holding onto someone. We've had the Walking Wings for a long time but Asa just would not let go of the hands! He'd have a complete panic attack. Now he just toddlers along. He really looks like a puppet. His muscles and joints are loose and he is uncoordinated so he is wobblely as everything but he is not afraid to try! That's a huge step! Now just to get video!

Asa is also cruising along furniture without holding onto our hands. Again, this is new and he is being very brave!

He is also holding one of my hands and using the other to cruise along. Last night he held my hand and cruised along the kitchen using the cabinet handles. This required him to take a few shuffles between handles while only holding one hand! So amazing!

I'm so glad we started the aqua therapy when we did because Asa is having a great surge in gross motor skills and having the extra therapy can only help.

He is also getting quite good at getting off the furniture we put him on. He gets out of bed by himself, off the couch, off the recliner, etc. This has mixed blessings but it is all very welcome!

He is not eating solids still but has increased the Elecare. So much so that he is almost out and a new shipment can't be delivered until next week! I called the GI and they should have sent new orders to the HHC so we can bridge the gap. I just didn't realize how quickly an extra cup here and there would add up. Hopefully they'll deliver some extra tomorrow!

He is also sleeping weird! He is staying up late or waking up early, like 4am early. This morning he was so funny even at 4! He woke up and I went in to lay down with him. He just kept "talking" and making funny hand gestures. His talking is grunts, sighs and hums but it is adorable. He was definately telling me some stories! I wanted to eat him up....for 15 minutes and then I just wanted him to go back to sleep!

I'll add videos to my "to do list" tomorrow!

Christmas Grinch

2011-12-19T10:05:00.001-06:00

"Christmas Grinch" is what Anna is calling me. She says this because we have no presents under our tree. I take that back, in October Gracie found things around the house that we'd all like and she wrapped them up for us. Those presents are under there.

I've bought gifts. They are stashed in our bedroom. They know the gifts are in there. I just haven't wrapped them. Initially, I was waiting until I had bought a decent amount so i only had to drag out the paper and tape and bows once or twice. But as I noticed how disturbed the kids were by the naked tree my reasoning changed. Some kids have empty trees all season, only getting gifts when a charity delivers donated gifts. Or maybe there are no donations and the tree stays naked even past Christmas morning. My kids know they have presents ready to go under the tree but many kids are left to wonder.

I think we already keep it pretty simple and meaningful. "Santa" only brings 3 gifts because baby Jesus only got 3 gifts. We also only give 3 gifts. They make their wish lists out carefully! Still, I think there is room to simplify, to appreciate our blessings. There are many times that my own wish list gets out of control but it doesn't take long for me to remember that we have all our "needs" met and then some!

I'll get to the wrapping but not until they have some awareness of the blessings we have. And we are already talking about Christmas being different next year.

Pulling up!

2011-12-12T20:59:00.001-06:00

Our Christmas tree has a button we step on o turn the lights on. Asa pushes the button with his hands to light the tree. This morning Asa was sitting in the floor in the living room and I told him to turn the tree on. He scooter over to it but then scooter back to where I was curled up in the recliner. He reached up and tried to pull up. Usually I have to hold a hand and give him support while he untangled his legs and feet. This morning though, he grabbed my leg and the chair and pulled up on his own! He has done it 3 times today!! Oh and after he pulled up he turned his back to me, took my hands and pulled me so I'd get up. We walked to the tree where he tried his best to stomp on the button! He never did hit it though because his balance and coordination are awful! :-)

On the GI front, Asa kinda self weaned off foods. He just drinks the Elecare formula now and we offer him bites when we eat. Many times he refuses our offer. We have noticed that when he does eat he gets a rash around his mouth and often has diarrhea even though he is chronic ally constipated! We know he had blood test that showed food allergies. We pulled those foods but didn't really see a change. Now that he pulled the foods from his diet himself it seems like we are noticing a reaction.

I'm so worn out over eating issues. He prefers the formula, its faster and easier and apparently his body likes it better. I'm finding it hard to sit for 30-45 minutes and coax him into eat 80 calories when he needs 280 per meal. Its like a never ending feeding cycle! He loves to have a cup while we are in the van driving to and from school. They offer him food at school and he does eat better for them but they get to give him treats like pudding since he's already had his complete nutrition. Its so hard to push feeding real food! I just play it by ear! We never don't give him food if he wants it but we don't waste time forcing it either.

I feel like I'm leaving it on a downer part of the update but overall things are going well!

Changes!

2011-12-08T22:57:00.001-06:00

I'm not a huge fan of change. Even good changes take some adjustment and I kinda just like a nice smooth hum kind of life! I'm sure this makes me seem pretty boring and even down right depressing to some of you! That's OK by me though!

Asa's life is kinda like the movie "Groundhog's Day". He goes to bed about the same time, wakes up about the same time, eats the same things at the same time....very routine. When there is a change in the routine I can gaurentee something is stirring. Sometimes its a bad thing like a cold or bug but it can also mean a development surge.

Recently Asa tried to change his sleeping routine. He was horrible going to bed. He was up hours later than his norm. He was restless and stirring in his sleep. He got up this morning before 5 am and from the looks of things he'd been up a while just playing in bed. He has also stopped eating. He will only take his Elecare formula by mouth. He has some interest in food but not an appetite or huge desire for food. He had been doing so well too! :( He is more gaggy and constipated too. Just not a happy tummy.

For a while I watched these signs and waited on the other shoe to drop. He did get a slight stuffy nose but nothing horrible. No other signs of sickness.

But he has had a big surge in some developmental skills! He got out of bed and scooter to his door on Tuesday.....first time in months and only the 3rd time ever. He is much steadier when walking and holding hands. And don't forget about using the adult walker on his own! BTW, he still won't use the kid size walker at school! He stood alone in a chair at the table while he watched it snow. He played outside Saturday as we hung Christmas lights. He rode in his power wheel car, walked in the gait trainer and scooted all over. He even scooted out of the yard and into the taller weeds in the tree line! He was on an adventure! He is doing some really hard work in aqua therapy!

So it seems that while his body is working so hard in these gross motor areas, his body has to give a little in other areas. Its typical mito, actually. Only so much energy to go around! Now I could be wrong and he could wake up in the morning sick but so far so good. This seems to just be one of those happy times of change!

And in another area of change.... after Christmas we will start looking at other school/class placement for Asa. He has really outgrown his class. I love his class, his teachers, his school but just like a moma bird pushes the baby bird out of the nest, its time for his teachers, therapies and us to push him beyond his comfort zone. Please pray that we find the right fit. That we have wisdom to make the right choices. And this is nothing that has to happen now. We just need to reevaluate! I'm praying this is another change that while it may not be fun, will turn out great!!

Best birthday ever!

2011-11-29T22:07:00.004-06:00

My birthday was Sunday. I'm not much for big celebrations at all. I don't need tons of gifts either. At this point I consider it a great bday if I don't have to change diapers or cook! And I don't think I did either on Sunday! Moma fixed a yummy bday lunch of my favs. I got tons of Facebook wishes. My partner in crime with the kids at church, Yvette, got me a cookie cake and the kids all sang and gave me a card. Anna sent me a sweet bday text. Cade and Gracie said they would have but I won't give them a phone! And I took a 30 minute nap! That's what I call a rocking bday!

But Asa gave my a wonderful gift too! While we were at Moma's for lunch, Daddy got out a walker my grandmother has used. I looked up and here comes Asa just walking away with it! Daddy was just supporting the walker so it wouldn't roll away since Asa had poor control! When he uses a child's walker he will barely hold the handles without us holding on too. He will do it with us but he is usually very MAD about it. And with the gait trainer he wants the chest prompt to lean against. He usually demands all the support we will give him! Well, just check out the video:

I can't believe how strong he has gotten! One night he was sitting and playing at the bottom of the stairs. Once I glanced his way and didn't see him. Then I saw him on the first step! I started yell and calling everyone around. I could hardly believe that a kid who can't stand or crawl on his own could climb a step. As I shouted and celebrated Gracie came to see what the fuss was about. When she saw me losing my mind she said "oh, yeah, I put him up there earlier"!! Hahaha, they really got me!

And lastly I just have to share a blog post from my friend, Clara-Leigh, with you! I just loved it so much! I hope you do too!

http://mitolifewindow.blogspot.com/2011/11/priceless.html

It's been a while!

2011-11-26T20:25:00.002-06:00

I can't believe how long its been since I updated! I've thought about it and wrote updates in my head but never got farther than that! Since it'd take too long to go back that far I'll try to hit the highlights and then update regularly again!

Asa got his foot braces. SMOs. They go just above his ankles. I'll have to get a pic sometime. He is doing fine with them. He doesn't seem mind wearing them.

He also started aqua therapy. The first week I had the time wrong. In fact, I had planned out the whole day for another week! I had planned for several appts that didn't even exist until the next week! For our second appt the therapist cancelled. It was good too because Asa had a stomach bug that was going around his class. They were already scared of his regular puke I'm sure they wouldn't like diarrhea added to the mix! The third time was a charm though and Asa did great! He was so tired afterwards though! So was I! I had to get in and be on puke patrol. I also got to do some of the exercises with them.

And speaking of puke.... no one told Asa's GI system that it was normal so it continues to gag, reflux, puke and constipate him daily. He has all but stopped eating food and only wants his Elecare to drink. I guess this isn't so bad all things considered but it sure isn't "normal". I don't even know what to say about it but it isn't fun at all.

So that's pretty much a quick catch up. Hopefully I won't get so far behind again! :-)

A little update....

2011-11-01T22:12:00.003-05:00

First of all, I got an email from the GI NP that the Gastric Empty Scan was normal. I know when you hear "normal" you celebrate but in this case it isn't completely good news. If the test had been bad we would have options to help stop the gagging and puking. But just because it was normal doesn't mean everything is OK. It just means it was OK from 8:30-10:30am last Friday. Makes sense, right? Even as I opened the email Monday, Asa was gagging and couldn't eat until 10:30am. And he has refused some of his favorite foods and only wants his cup of Elecare. But the test was normal!

On the plus side.... Asa had an eval for aqua therapy today. I think he'll really like the aqua part and hopefully tolerate the therapy part! We have to be watchful for several thing though. First, the pool may not be cool enough and just the warmth can tire him out, think of your muscles after a hot tub. Second, it is an open area. There are 3 pools, a regular, a hot tub and the cool. There are many classes and therapies happening at once and it can get loud. Hopefully he won't be bothered too badly. And third, there's a no puking policy! Can you believe?! I'm being sarcastic, of course, but guess what Asa was doing during the eval....gagging and spitting up! Nice huh. So I'll get in the pool with his trusty puke cup and watch for signs of trouble and catch puke if I need to. He starts next Thursday because he has an eye appt this week.

And now some shout worthy videos....

When I picked Asa up from school he was in the gait trainer standing at the door. When we opened the door he took off outside! Now he can do pretty well in big open smooth floored places but I've never seen him go like he did today! I backed him up some so i could video and this is what I got....

Now the school gait trainer is an older model than ours and it is light so i thought he wouldn't be able to do his at home. Boy, was I wrong!! Our backyard has a back slope so that helps but he was really going! And I might add, this so the same hill that Cade and Gracie learned to ride bikes down when they were 4. Asa is 4 and learning to go down it differently but I'll take it! :-)

And if you aren't drop down impressed just go watch the video from early September where I'm trying g to coax him to walk on the smooth ground and was all tears. We've come a LONG way, baby!

Self doubt and reassurances!

2011-10-28T21:56:00.008-05:00

It may be surprising to you to hear that I over think things. I play and replay decisions in my head. I guess many of us do that but I find myself doing about nearly everything with Asa....his meds, his docs, his tests, he food, his everything!

After our appointment with GI last week we decided he needed a gastric empty scan. Even with all Asa's GI issues he's never been investigated as to why. We can assume and try meds but he still has issues, major issues! So weset up the appointment at Vandy and it was this morning at 8am. Since we were just at Vandy on Tuesday I really didn't want to go back. We tried and debated and tried some more to get the scan done here in Jackson. Even after talking to the nuclear medicine tech here it just seemed like the best place for the test was Vandy.

And then I questioned and over thought whether we should go up last night and sleep in a hotel or drive up 3:hours and battle rush hour traffic this morning. Finally at 5:00pm I placed a super low bid on Price line to see if we could even get a room we could afford. Surprisingly we won and it was a great hotel! I love it when God gives me reaffirmation that I'm on the right path!

This is in the hotel this morning before the appointment. He was so good!

We got there early and it was pretty empty. About as empty as when Mom a and I left there at 6pm on Tuesday! Asa liked checking out the stairs and the automatic door. He made a little friend too. I wish I'd had the camera when he reached up and poked her in the ear! Lol

For this test they laced some of Asa's Elecare formula with a contrast. Then he laid on his back, strapped to a mat, with a scanner 6" above his body. Oh and he did this for 2 hours!!! I was so afraid that sensory sensitive boy would freak out some part of the process but he didn't! Not one little bit! As one friend said....Asa was unnatuarally good and insensitive!

He had to have a syringe to play with too! This entertained him for 1/2 the test!

A big thumbs up because he was handling it all like a rock star.....as long as he had an ear!

This is all the clearance he had. The straps were from his ankles up to his chest.

Clapping when he was finished! I don't know if you can tell but there was a huge sweat ring on the pillow from his head!

And as happy as I was for him doing so well, I was even happier when we got invited to a Rascal Flatt concert on our way out! Yep, we listened to them perform for 30 mins and then got to met them and chat and take pics!They were very sincere and kind with all the kids!

And if you don't know who Rascal Flatt is here is a song they were singing as we went in! Tons of emotions and lots of teary eyes!

Oh and we won't know anything about the test until next week.

More appointments!

2011-10-26T21:21:00.004-05:00

We headed back to Vandy yesterday but not without a little drama!

Gracie woke up with a fever. She's been coughing but yesterday was the only time she had a fever. I got plans squared away with my mother-in-law for her to take care of Gracie. Not long after I hung up with her, Anna texted that her freind, who she was riding home with, was sick and not at school! Call number 2 to my amazing MIL!

And the kids weren't the only ones trying to stomp my plans! On Sunday Barry changed the oil in my van. He noticed a bigger problem and I picked up a replacement part on Monday. Barry and my dad worked all evening putting the new parts on ink to discover it was a totally different part needed! Poor guys were tired! With my van up on blocks we had to take Moma's van. Daddy picked up the water pump and they put it on Tuesday after work while we were at Vandy. The blessing in this is that the van didn't break down on me on the road somewhere! And also having handy fellas who can fix almost anything!

So Moma and I headed back to Vandy for a 3:30 appointment with a dietician and a 4:30 appt with the neuro/geneticist. The dietician was a last minute booking and they were late. This left little time for talking. They suggested adding more calories either with Duocal or another formula. I questioned (a tiny bit) how we could get off formula. I didn't get too far! Since we were running out of time I mostly just listened. It's kinda pointless to even be talking about all this now...before the gastric empty scan.

After that we headed up to neuro/genetics. I've asked all of Asa's docs to help figure out his panic/puke/crash episodes. I keep getting the same answer....anxiety and up the Zoloft. Dr. Tyler explained it best..... in a normal person we get startled and our body has a quick reaction. In Asa, his body and brain don't communicate quickly enough for him to calm his body down after a startle. So he gets startled and then his body goes through all this reactions before he can calm again. Once it starts there is no way to really stop the reaction so we use Zoloft to keep him from having the startle to be in with! Now, his episodes have gotten soooo much better but the are still there and he is set off nearly everyday! It is no fun for us so I'm sure its no fun for him! We see the ped tomorrow for a 4 year old check up and to get him to up the Zoloft. Hopefully that helps!

Friday Barry and I head back to Vandy for the scan. I really hope this gives us some answers! Truthfully I hope the test is really abnormal! Hows that for a prayer request! Let me explain.... Our thinking is that Asa's stomach doesn't release the food into the intestines fast enough. That keeps him from feeling hungry but also keeps him nauseated and gaggy. My fear is that when we wake him at 4am to be at Vandy at 8am, well, his tummy will be empty, will have woken up on the 3 hour drive and will perform perfectly for the scan. I'm told the scan leaves a lot of room for interpretation. So even going to these great lengths we still may have no answers. Sounds like a familiar song!

After the scan I'll try the suggestion of the dietician but I'm pretty done with pushing so much formula that he just pops. I'm not sure where the middle ground is but I'm looking for it!

I'm editing to add that Asa was a doll for this whole trip! He was very "coo-ey" on the ride up, making lots of new and different sounds. He was great in the waiting room an for the docs. He was pretty abusive to Moma though, climbing all over her and being busy! He rolled his wheelchair all down the hallways and the waiting room. It was great! We were about 20 mins from home when he got sick nd puked all over himself but at least we were almost home! Poor kiddo!

Fall Fun

2011-10-22T22:16:00.007-05:00

On Saturday, we took the kids from church to Falcon Ridge Farms for some corn mazing, pumpkin picking, petting zoo petting and all around fall fun. Unfortunately only 4 of the kiddos ended up going and 2 were mine!

Look how smiley they are in the van! They soon got tired of me and my camera!

Still smiling as we entered!

This is the whole group....minus me taking the pic and Asa strapped to my back in the carrier, which I LOVE and wish I'd owned longer! The 3 girls charged ahead and beat the rest of us. I'm pretty sure they didn't read the clues but just forged ahead and made their own way out!

Corn box after the corn maze. Asa loved it!!! And it was really cool. The kids skin was cool to the touch when they got out. I'm thinking we need a corn box for Asa in the summer!

Each took a turn being buried in the corn. I'm not sure I see the facination but then again I didn't get in!

Gracie in the bouncy ball corral!

And since it was empty, we adults gave it a go too. My legs still hurt!!! It is harder than it looks! And I must be the most uncoordinated person in the world because I feel of backwards and forwards!!! Thankfully Anna missed those shots and only has me on the ground!

Asa liked this swing and would drag his toes in the dirt as he went by. Reminded me of the tire swing and huge tree we use to play on at my grandmother's house. Her dirt was the best!

Chilling with Cade in the hammock.

And just because we are big kids at heart.... A tea party with Asa's sippy cup and juice box!!

It was a great day!!! The kids had a blast, the weather was great, the company was a blessing and Asa had the best day in weeks! He didn't puke or get freaked out one single time! Even though we really pushed the limits!

And I'd like some tips from all you folks who are posting pics of family pumpkin outings where the little darlings are in matching clothes and are all posing and smiling. We did good to even be dressed and I'm not 100% sure Gracie brushed her hair at all that day....she is boycotting it seems! Not to mention that each time I said "smile" they ran for the hills, or corn box! I'm not complaining but I'm wondering if my parenting handbook was missing that chapter. How bout someone just cut and paste my little darlings head onto the bodies of your perfectly posed and dressed kiddos. Feel free to not use Gracie's real hair....I'm thinking she'll be in dreads by Christmas!

Half way there

2011-10-20T08:13:00.002-05:00

We are half way thru the yearly specialist follow up. Last Monday was developmental medicine. This past Monday was cardiology. Yesterday was GI. To be fair, we see GI every 4 months so this was more of a regular appointment than a yearly check up.

To recap, the dev ped said Asa has probable autism secondary to the mito. I need to call and set up appts to figure out the next step. I got his clinical notes on the way to our GI appt.....not the best way to start the day! The cardio appt was great and we don't have to go back for 2 years! So on to GI yesterday.....

Asa has lost weight again and he weights 28lbs. This puts him right at the bottom line of the growth chart. He is 35". He'd make a perfect 2 year old! Asa's appetite has been on a decline and I started replacing all fluids with formula. This still wasn't enough. And it would be easy to just fill him to the gills with formula but even without a ton he is gaggy and drooly and pukey. Life is no fun...for him or us....in that state. We've always just upped the meds and never really checked out why this is happening. Soooo, next Friday we will be at Vandy at 8am for a Gastric Empty Scan. Asa will drink some formula laced with contrast. He'll then have xrays taken at certain intervals to see how the contrast leaves his tummy. We suspect it'll be slow. If it's too slow it'd explain why he is still so gaggy. Then we can try different meds or different feeds. If it's normal he'll probably have a scope later.

On Tuesday we head back to Vandy for the neuro/genetic appt. Then Friday we'll go back for the scan. After this we'll be done with the appts....except news ones based on the autism stuff. Anyone else tired?

Perfect

2011-10-17T21:30:00.002-05:00

Perfect....not a word we hear to describe Asa often....not from a doctor, that is! Of course we all know that Asa is perfect, created just as God designed!

Today was appointment #2 in our October Specialist Marathon. We travelled 3 hours each way to see Asa's cardiologist. Asa had an echo and EKG. He was soooo good for both tests. And the report is that Asa's heart is "perfect"! And we don't have to see him for 2 years! Yay!!

This is very, very good news! We know that Asa's muscles, GI system, brain and eyes are affected by mito. Thankfully all of these are mildly affected but it does add up. It's great to have a "perfect" report on his heart!

So we have the developmental ped and cardio under our belts. Wednesday is GI. Vandy called this morning and moved our November genetics appointment up to next Tuesday. I need to get him in with the optometrist and figure out all the new autism stuff so I can make appts for that too! I told you October is busy!!

At least when I'll be able to quickly recall the dates of our last appts when I have to give a history to a new doc! We are seeing everyone in October 2011!

What a week!

2011-10-14T21:08:00.003-05:00

After celebrating Asa's birthday on Sunday we hit the ground running on Monday!

Asa had an appointment with a developmental ped. This doc was new to us because Asa was seen in the neonatal follow up clinic and graduated out of it last year when he turned 3. This doctor is from Vandy but comes to Jackson monthly which is such a blessing! If anyone local gets a chance to support Ayer's Clinic I encourage you to do it. Its amazing to not have to drive all the way to Vandy for appointments.

Anyway, I had lots of questions about some of Asa's behaviors for this Dr. "Autistic like features" is a symptom of some mitochondrial disorders. Asa definately has several autistic like features. He fixates on certain things (water) and avoids others (soft Teddy bears). He is affectionate to us and will finally tolerate kids but doesn't seek them out or even play with them. All of his sensory issues could be considered autistic like....or they can stand on their own. He doesn't handle transitions well, even happy transitions like coming home from school. Soooo, my questions for Dr. Couch were mostly about seeking autistic therapies vs Asa just being spoiled rotten. Dr. Couch and I talked for a long time with him watching Asa play and interact. He did a little exam and got Asa to walk and play with him. Asa is a rock star when you do what HE wants but if you challenge him he looses it! So what does Dr. Couch do but go and force Asa to do some hard gross motor work, like standing while just leaning against the drs leg or walking while facing the doctor vs the Dr behind him. So Asa lost it and the Dr got to see a full on episode, fit or plain ole rottenness! Then he gave Asa back to me while we finished! Thanks doc!

His final thoughts were that regardless of whether we call it autism or an autistic like feature of the mitochondrial disorder, it is a problem and some therapies may help. He gave me a few names in Nashville to call and I've got the number of a place in Memphis. I feel a little overwhelmed about starting all of this. I feel autism is such a buzz word right now and I don't want to waste time or money on stuff that won't work. I've got very little patience too! I've spent so long wondering if I'm overreacting to this bad behavior or was I just afraid someone would say the word "autism" that I really didn't know how to feel after the appt. At Walmart after the appt the cashier was talking to Asa and asked if he was autistic. Now I realize the cashier isn't a doc but I felt relief and a sting when she said that. Turns out she has autism in her family.

I've basically not done anything but read and make phone calls (and placed on hold forever) since the appt. It'll probably be a few weeks before I tackle this issue and spots. The good thing is Asa is manageable so for the most part we are OK for a while.

Fast forward to today... Asa woke up a little earlier than usual and he was mad! He usually spends 10 minutes cooing and kicking the wall before I go get him up. Today he was screaming from the get go. As I opened the door I could tell something was wrong. I could SMELL something was wrong! Asa had gotten sick at some point during the night and pooped (on his own, yay) and was a mess! When I picked him up I could tell he was warm too. He did NOT appreciate a bath first thing in the morning and was very vocal about it! That's pretty much how he spent the next several hours! He is not a kid who gets sick and just lays around. He's the kid who gets sick and screams and clings and MUST have you.... NOW. Its exhausting I tell ya! I'm not sure what the issue is but I'd guess viral. Nobody here's been sick and he isn't giving me huge signs of pain, just fever and cranky.

Oh and now would be a good time to mention tat I've had a pain in my neck for several weeks. Yesterday I broke down and called a chiropractor. I've never been to one but I knew I couldn't take meds that make you loopy so I went to a chiropractor. He stayed and overall I'm not too bad, yay. I do have a problem relaxing and probably having dense muscles locked up some stuff. At least that what I understood. I got news for him though, next week is worse! A trip to Vandy for cardio and GI here, I don't see me loosening up much! Anyway, he adjusted me, did some department muscle stuff and used an electro shock something. I did feel better but by the end of the night I ached all over. I guess those muscles were tight! I had to cancel today's appt since Asa couldn't go to school. And Monday we'll be at Vandy so i have to cancel that appt too. At least I can straighten my neck and even turn my head and I even got some sleep last night!! That's progress!

After all that complaining I bet you just can't wait for next weeks update on the cardio and GI appointments! :-) And I'm not going back to spell check and edit so if you have any questions about this jibberish lay them on me!

Happy 4th Birthday Asa!

2011-10-10T15:18:00.001-05:00

Asa turned 4 years old on Friday, October 7th. Our schedules were jam packed Friday and Saturday so we had a birthday lunch and party on Sunday. I don't think Asa minded! We had a Birthday Burger Bash. This is the first year Asa has had any desire to really eat. I love it when Asa wants, really wants, to eat! We battled for so many years to get him to eat just a few foods....just applesauce or yogurt. Forget textures or anything that required chewing. If it hadn't been for Asa's awesome feeding/speech therapist I'm sure I'd given up and he'd be 100% tube fed today!

We did a Burger Bash because on our second visit to Houston to see Dr Koenig, I asked about the feeding and the tube. I asked if we should just give up on eating and embrace the feeding tube. It take much less precious energy if Asa didn't have to worry about eating but just got his nutrition from his tube. Dr K told us not to give up because "when Asa is 16 and wants to grab a burger with friends, he'll thank you"! Wow, that gave us such hope and we trudged along! And now at 4 years old Asa can eat a burger.....he choose not to but he can!

Here's the party videos first. I had been playing "happy birthday" with Asa all week so he wouldn't freak out when we all started singing to him. I was also hopeful that he would blow out the candle since he can blow a pinwheel......with his nose! Turns out the candle REALLY freaked him out! That's why he pushes the cake away at the end of the song. He expected a lighted candle.

He did finally get into the cake! He ate and played and ate and smeared and ate some more! And yes, all that cake did make him sick! I'm not sure that he isn't still feeling the affects of the cake!

This cake was so cute in the order book. It was made with fondant and was bright and colorful. Oh well, I still like the idea.

Of course he didn't want anything to do with his burger party! He did have a great time with the corn on the cob! I should post all those pics. He just kept touching and humming and picking it up above his head. Next year we'll have a corn party!

Making a dent in the cake!

And then the coming down from the high! He was resting on the couch with me......

But feel asleep with Daddy! Man, birthday parties are hard work!

A few "firsts"

2011-10-05T21:26:00.001-05:00

Asa's had a couple of "firsts" this week.

On Tuesday, as soon as we got to school, he had his very first school pic made. I was running late and the photographer was finishing up so I just ran out there with Asa. I sat him down on the spinning stool and the guy snapped a few. I'm sure they aren't great but its exciting that he got to do it! Asa had been self feeding applesauce that morning and gotten some in his hair. I tried using a baby wipe to clean him up but you can imagine how well that looked! I can't wait to get the proofs back!

Right after the pics, we went a few rooms down and they were doing vision and hearing screenings. I really just wanted to see how Asa would react and he did great! The best part is that his vision and hearing are both perfectly normal! Yay!!!

And then today! Today Asa was measured for his first pair of leg braces. He'll be getting SMOs, which come up just over the ankle. Asa's floppy muscles and loose joints don't support his weight well and his ankles roll inward. These braces will support his arch and ankles so this turning doesn't become a huge problem later on. After the fitting we had a pattern wheel of patterns to choose from. Asa really wasn't into sharing the pattern wheel so I just picked a sports theme with baseballs and basketballs. It'll take a month or more to get the braces approved and made.

Here are a few pic of the brace fitting. I wish I'd had my camera with me for the school pic and screening. I feel like I missed a milestone! Hahaha!!

Don't let this fool you, this was the only time he wasn't cooperative! Asa likes shoes so he thought he was picking out a new pair!

Asa had to have his own tape measure too!

Still "helping"!

And a closer inspection. Check out that face! He was unhooking the Velcro strap and is still a little unsure of the sound and feel of Velcro!

October!!!

2011-10-03T07:22:00.004-05:00

Wow, when did October sneak in here? Or maybe it didn't sneak up on me after all but instead I was just turning a blind eye!

Asa will turn 4 on Friday! 4 years old! Its bittersweet really. At years old he is dependant on us as much as a 6 month old would be. I think each year will widen the developmental gap for him. Even as he gains skills the rest of the world surges ahead by keeps and bounds, not at the snail's pace that would allow him to catch up. On the other hand, he IS 4!!! We made it 4 years! Yay!!!!

I'm planning a Birthday Burger Bash! Several years ago, when we saw Dr. Koenig in Houston, I asked if we should just give up on oral feeds and get happy with tube feeds. We'd been trying for sooooo long to get him to eat with very little results. Dr. K told us to keep trying to feed him and that when he was "16 and wants to grab a burger with friends, he'll thank you"! And while he isn't 16 yet, he will eat some bites of a Burger! On Saturday he ate a whole hot dog! I peeled the outside off and pinched it into tiny bites and it took him an hour but he finished it. I didn't push him to finish but he'd fuss if I took his plate away. He didn't eat much else til Sunday morning late so it wasn't a perfect plan!

October is also full of appts for Asa. Next Monday we see a new developmental ped. The next 17th is a trip to Vandy for cardio. The 19th is GI. Try as I may, I couldn't get them all for 1 day. And our geneticist/neuro couldn't see him until November 22. I should also try to get him in to the eye doctor while we're at it!

Before I know it October will be gone and Christmas will be upon us! YIKES!

2011-09-26T21:13:00.005-05:00

I keep hearing this song. It's based on the biblical story of Naomi and Ruth. From the first time I heard it I thought of Asa though. Maybe you'll agree, maybe not, but I thought I'd share.

Asa has had a few fun filled days. This is his kind of weather! On Friday we had an early morning appointment. Since Asa tires so easily I try not to plan much before school. Sometimes I have to take whatever appt is available. After the appt and a disappointing trip to the pharmacy, Asa had gotten tired and was in the middle of a huge gagfest and meltdown. Instead of taking him across I decided wed skip school, rest and reset and then have a picnic at the accessible park. The weather was wonderful. Asa dozed off on the short drive over. After he woke up and we had a picnic we set out to play! The playground has 4 ramps. Asa spent the next hour pointing at ramps that he wanted me to push him up and down! And he didn't want to stop! I got my exercise! I also made him do some pushing so he could build those arms!

After the park we went to the grocery store for a few things. Asa pointed to the bananas and after he signed "banana" I gave him one to hold. I was surprised when I turned around and he had peeled it open!! I didn't know he could do that! I felt a little odd explaining to the cashier that I'd let him eat one and why it was exciting. She was great though and cheered along with us!

On Saturday we had a family reunuion. Asa kept trying to roll put the doors to play outside. He couldn't get over the threshold but after the great banana event I was afraid to take my eyes off of him! He did spend alot of time pointing so I could push him around outside!

On Sunday Asa went to big church, not the nursery or Children's Church. He did reaaly good. He was very quiet but early on he handed me his talking cards (PECS) and showed me "home"! Ha!!! Then he gave me the "drink" card 3 times so I took him out to get his cup. Once we got to the other room though, he just wanted to play! Faker!!

After church and lunch, he hung out with my dad. I'm not sure what all they did but they were outside for hours. Asa must have been worn out because he slept from 8:30 last night til 11:30 today. Soooo, he missed school again today! Probably a good idea too. He spent 2 hours trying to poop! No kidding 2 hours! He was drenched in sweat and tonight he has petechia on his face from pushing. It was awful but I'll spare you the details. I'm sad to say he only produced a tiny amount so he'll have to redo the process again. I wish we could come up with a good plan so this doesn't have to happen every few days.

Sorry if that TMI but its just how we roll here!

Wish GRANTed Project

2011-09-20T20:51:00.002-05:00

As part of Mito Awareness Week the Facebook page Wish GRANTed is featuring different faces of mito. Asa is one of new faces tonight. Check out the blog on the Wish GRANTed page by following the link here.... http://www.facebook.com/wishgrantedproject?sk=app_223152464403325

And if you linked Asa's blog from Delaney's page, well, welcome! :-)

Mitochondrial Disease Awareness Week

2011-09-19T07:14:00.003-05:00

Today is the first day of Mitochondrial Disease Awareness Week. Even as I typed that I don't know what else to add. What else to type. Most readers have been around long enough to see my yearly public service announcements on FaceBook. Or you've just followed here long enough to know how mito has affected Asa and our family. I guess I feel like everyone is tired of hearing me go on and on. Most of you guys either fight along with us or you are my close friends and are very aware of mito by now!

And then.... I watched as my FB was turned green by friends changing their profile pics in honor of mito week.

And then..... some wonderful, beautiful friends that I've never met in real life honored Asa and others by mentioning mito even though they fight battles of their own.

And then.... I think if all the kids that mito has taken from their families so far this year. And the many more that I didn't know or have contact with. All those families who didn't get their happy endings. So sad!

So I can't let the day pass without telling you all what you all already know. Mito stinks! It robs families. It takes life. There is no cure or treatment.

But I also have to say that I'm so thankful that Asa is healthy. He fights, he struggles, we struggle but we aren't close to loosing him. He is here. He is healthy. And I am grateful and thankful!

IEP

2011-09-19T07:14:00.001-05:00

I had Asa's second ever IEP meeting on Thursday. This time last year I was super prepared and super nervous! This year felt more relaxed! I woke up Thursday morning and still felt short of breath and panicy though.

I see Asa's teacher every day and his therapist weekly. We chat and toss around ideas all the time. I guess the IEP was good to get all of ideas in writing. Last week we were tossing around ideas for PT goals and I was afraid that we had the bar set to low last year. We've had crawling as a PT goal since he was little bitty. And guess what, at 4 years old Asa still isn't close to a crawl! I was very impressed that this years goals include "standing a line for 10 seconds"! WooHoo! I look forward to that day!

His long time OT was very impressed with how far he got in his eval. She said they were scrambling to gather the materials for the next steps of the tests! How fun is that!

And as for speech, Asa has a new SLP. In case you didn't know Asa has no words. Zero! Not even a "mamamama" or "dadadada". And he started speech therapy at 6 months. He's had speech therapy once a week until he was 3. Then last year he had speech twice a week for 30 min each time. Now I'm no expert but if all this work has gotten us nothing then I'm not sure we'll ever get anything. That's why we've started looking at Alternative Adaptive Communication. So far he seems to be doing really well with the PECS cards. One day this week we were in the van on the way home from school when Asa started hugging a card from his set. When I asked him what he had he showed me the "hug" card! How smart! I go in to the school next week for MY PECS training. Seems that there is a set way to use these cards. Asa already gets the idea though so I'm excited!

Oh and Asa won't be moving to another class for a while! Yay! Maybe I should be sad about that but I'm not. Overall, Asa's development was that of a 2 year old at best. And with that in mind I have no problem keeping Asa in his safe, happy class. I feel like he has enough struggles so a happy (happier!) 2 hours a day at school is good enough! And his teacher is by no means just a babysitter! They work on numbers and colors and his PECS and PE and art and music! He has it made, I tell you! We are so blessed!

2011-09-10T18:14:00.003-05:00

Asa's school got a new toy. The 3 special ed classes share it but so far its in Asa's class everyday. It's called a Tap-It. It's like a huge touch screen tablet. He really likes it but every time I try to video him he starts screaming! Naturally!

Because he pays with the Tap-It and the switch button computers, he also loves the Toshiba Thrive tablet we got recently. One of the first things I did with the tablet is try out the camera. The dog was lying in a pallet that Cade and Gracie made to turn flips in and I called him to me. It was a simple, quick video. Then I found an app called "Toddler Video Lock". The app plays pre selected videos in a loop that locks out all the function keys of the tablet so kids can't exit the app. Since the doggie video was the only video on the computer, it was the only video that Asa could watch. Surprisingly, the dog video cracks Asa up! The funny thing is that since Asa works with cause and effect so much, he thinks his tapping the screen is making the dog run! And if you notice in the video, he also knows to tap the lower right corner so a menu opens up. He also knows this about the Tap-It at school!

And speaking of school, Asa's IEP is coming up on Thursday. His teacher and discussed how neither of us thinks he ready for the next class. He just doesn't handle the transitions of the day well at all. As we were talking Asa was eating his lunch, a slice of deli turkey torn in pieces and 1/2 piece of cheese in small pieces. I put it in a small clear container. Asa picks out the turkey and eats the cheese first. This in itself is a great OT and sorting skill! During our chat and his lunch, he put a block in the little, near empty container. Mrs. Joyce commented that Asa had left 2 pieces of cheese in the container. She said this to me as Asa was playing with something else. He overheard her and immediately picked up the container and started digging the cheese pieces off the side! It was so funny and just goes to show how great his receptive language is. He really understands everything we say! It must be so frustrating to him that he can't tell us what he wants and needs or that we can't understand him! Maybe one day!

What a difference a few days makes!

2011-09-07T06:28:00.003-05:00

Our temperatures took a huge drop when TS Lee blew upwards from the coast. Our high today was in the mid 70s! I broke out my jeans and hoodie! Yay!!! It was sunny but a little windy. All in all, it was Asa's kind of weather!!!! And a million times better than the 90s and triple digit heat indexes we've had for weeks now!

He didn't do his usual screaming and squealing on the car ride home from school because I kept talking about how we'd play outside when we got home. And boy, did we ever!

First, Asa rode around the front yard in his Power Wheels car. We ate in a rural area and have a 4-6 ft woodsy stretch between the road and the yard. I turned Asa's steering wheel so that he'd go in a circle. He's never turned the wheel before so i thought i was brilliant! Anna and I were playing soccer and Asa kept going into the rough! What a turkey! When we ride the 4wheeler he always points into the woods so we have to go onto the trails. He loves the sound of the leaves and twigs cracking and snapping. So silly!

Then, to get him away from the woods, I took him to the back yard. He played some tetherball and jumped on the trampoline. He really likes the trampoline.

Finally, when Cade and Gracie got off the bus I tried to get him to come back inside. That was a no-go! So instead I brought the gait trainer outside and let him do some dirt driving. The area where we took the pool down is nice and flat so I set him walking there. At first he did great! I was trying to get someone to video but the big guys were all devoted to their homework.....really?!!! My video is sloppy and I'm sooo loud but it's documented none the less! Here's the link but seriously, I'm loud so turn the volume OFF! Lol!

It seems that Asa's colon also liked the cool weather....or maybe it was all the Miralax and Colate....because we had to come inside to change 3 diapers! In just a few hours! We were inside when Barry came home and the talk of supper started! Cade requested a weenie roast on a campfire....as long as there was no electronics!!!

Asa seemed to love the campfire too. He just sat so quietly and watched. He ate almost 1/2 of a turkey dog too! After supper the kids played on the swingset for the first time all year! Asa loved playing in the tower and even went down the slide with help a few times. It was only another poopy diaper that finally forced us inside for good!

Unfortunately, the night ended with gagging, some puke and a drain tube! Same as last night! Other than that today was a great day and I hope Asa made some memories!

Big boy class

2011-09-04T23:15:00.001-05:00

Today was promotion day at church. For the last 3+ years Asa has been in the nursery at our church. We are a small church with a lot of family there so Asa's been cared for by the best and closest of folks. Today Asa moved into the 3-5 year old class. I was pretty worried about how it'd go. Asa hasn't even made it church in the last long while, unless you count last week when we got there and Asa got sick so Barry just took him back home.

He did great though! He sat at the table in his wheelchair and colored and played with his 2 friends. I didn't hear any screaming and I'm right across the hall so I'd know! Our class doors have little glass windows in them and I know there were several people peaked in on him! I taught children's church afterwards and he was good in there too. I hope each week will be this smooth!I put a link to the Wish GRANTed page on the right hand of the screen. It'd be great if you'd visit the page and "like" it. And share it on your own FB page. Help Delany get 10,000 likes and raise awareness!

September already?

2011-09-03T21:32:00.001-05:00

I can't believe its September already! Don't get me wrong, I'm ready for fall! The cooler temps, changing and falling leaves, pumpkin muffins and especially the return of my goodies and long sleeves! I've been touching them every time I open my closet for several weeks! I just love autumn!!
What I don't love is the way this year is flying by! Sure there are days that I'm just ready to close the books on the day but for the most part wish I could just hit the slow button! I kinda feel like things are easy right now. Anna isn't on the go to much. It won't be long until she has a drivers licence and a part time job and I'll have to vie for her attention. Cade and Gracie get along pretty well at the moment. They have such creative ideas and plans! Cade has really been very easy to get along with and surprisingly obedient. For a while he'd argue with us about anything we asked him to do. Lately though he has not only not argued but done what we've asked as soon as we ask! You can see how I'd love to hold him in this stage! Gracie is still in between the stage of innocence and growing up. She can still make the sassiest comments but in such an innocent way that you can't punish her because surely she didn't realize who grown that sounded! Right?! She was pretending to text her "boyfriend" the other day. She texted that he should like Gracie better because Jesuce (Jessica) couldn't beat her at tetherball! Where does she get this stuff?
And Asa. Lets just face it, the older and bigger he gets, the harder he is to deal with. He is make slow progress but the older he gets the more obvious his delays become. I've felt those old twinges of jealousy as I've seen typical kids his age. Don't get me wrong, we are by blessed that he has the skills he does and I don't know why these feelings creep up when I least expect them. The older and bigger he gets also,makes it physically harder to handle him. Picking him up out of bed, out of the tub, out of the highchair, lifting him into the van then out of the van, then there's the wheelchair. And you don't even want to know about the diaper changes! I'm considering getting a potty chair just to see what happens. I keep looking at them but I honestly have such low expectations that I feel buying one would be like flushing money down the toilet....pun intended. Maybe for his bday next month.

I hate to complain about Asa because he is really doing pretty good right now. Most days he is eating 3 tiny meals. Real meals like a pop tart for breakfast then a slice of deli meat and a couple of potato straws for lunch, followed by several bites of whatever we have for supper. He usually has 3 8oz cups of soy or rice milk and a juice box each day. The last few days I've substituted Elecare for the milk. I don't mix it to 30cals/oz though because that seems so thick and heavy that he only wants to drink not eat. I got an email from his GI on Thursday though. Well, technically, she sent it a month ago but I just found it. The dietician looked at the feeding journal I sent in and Asa needs more calories a day, like 400 more calories a day. That may not seem like a lot for me but when he is still getting sick on what he has now its hard to seeing adding more food or formula. I'm not sure if they figured in that he is really, really seditary. Does 100cals/kg or 1350cals for a 30lber sound familiar to anyone? And then we are back to the more he gains, the more I strain trying to care for him. He seems thinner but not FTT again.

Anyway, enough of my rambling! College football is on and I'm bored but I won't make y'all read anymore of my crazy thoughts though. Maybe I'll browse YouTube since I have REAL internet now!

Finding Asa's voice

2011-08-31T21:07:00.006-05:00

I didn't realize the link didn't take! So sorry, try this....

http://www.facebook.com/wishgrantedproject?ref=ts

I'm trying to get used to this tablet and blogging on it.

Asa went to school today. I tried to tell his teachers that he was pretty crabby. Sure enough when I picked him up he was in a mood! I think he did OK most if the day. Its just that when the teachers and therapist have a plan and goals he usually doesn't want to go along with it! Imagine that! The teacher said that while Asa wouldn't work for the PT, he did the same work with another person in the room. Leave it to him to not follow the game plan!

He has been scheduled to work with a person (I forgot the title) who will recommend a type of communicator for him. That work started today. My understanding is that they will try several types of things and see what works best for Asa.They'll then try to get insurance to pay for my boy a voice. That's what I walked in on today. A therapist was wanting him to work the cause and effect game on the computer with a switch button. And while this is normally an activity he likes to do its a whole different story when someone wants him to do it!

Right now we use PECS (Picture Exchange Communication System) cards. I have Asa's cards on pieces of contertop samples, tied together with a zip tie that I can then clip onto his wheelchair or carry with us. Asa really likes the tiles and cards and mostly we use then by us showing him the thing he has chosen. For instance, if he is coloring I'll get the card with the crayons on it and talk about how he is choosing crayons. But just this week Asa sorted out 3 cards and handed them out to me. I mumbled something in response but he stuck them out to me again. The kicker came when he stuck them out to me again and signed "please". It was only after he signed that I saw he was handing me the "cookie" card!!!! Of course I jumped up and found him a cookie, well a pop tart but that's the closest thing to a cookie that he can eat. Later I did find a WhoNu? Oreo cookie and broke it up for him. I think he'd just soon have the softer pop tart over the messy Oreo. On a side note, have out tried these WhoNu? Cookies. They are supposed to be healthy but taste like a real cookie. I think they are pretty good. I won't buy the Oreo again but the chocolate chip are good. Anyway, here's a pic of the PECS cards Asa handed me!

I've also been using my iPhone as a communicator for him too. My favorite app is the Answers:YesNo by Simplified Touch. Its a basic 2 button screen so he can make choices. At first the app only did Yes or No. On an update though I started being able to program the 2 choices. He really stared to understand this app when I programed "Pop tart" and "Pedisure" as his choices. When he picked "Pedisure" he got the cup if Pedisure instead of the Pop tart that he really wanted! He still isn't great at the choices because he really likes to just tap, tap, tap!

A more involved app is TapToTalk. You can add your own albums and pictures but so far we just use the basic free ones. I use this often when Asa is having a meltdown. I can go to the emotion page, choose the frustrated face, and then "I want to relax" button. Then we lay down on the couch while he pokes my ears until he calm and ready to face the world again. We also use the drink choices. I tap the milk or juice choices and Asa will hit the soda button a million times in a row!

I also use TapToTalk on the tablet and that was a biggie in deciding to get the tablet. Sadly the android market doesn't have any of the other apps or anything similar.

I've also toyed around with MyTalk and like certain things about it. Its very easy to take a pic of the object and use the app right away. Again I haven't really tried to change the settings though so I can't verify the ease of use overall.

All of these apps are cheap, cause that's how I roll! In fact I think the yes/no was. 99 and the other two are the free versions. These programs can be very expensive but if the freebies work then I'll use it!!!

I'm not sure what the school will decide. And don't really care as long as he is able it tell us his needs and wants. At some point it'd be great to carry on full conversations but right now we just need the needs and wants! I wish he'd pick up signing more easily. There is no equipment or programs to load or buy or carry around. Today he actually signed "I love you" to the dog! Complete with the point to the dog!! Even when he signs it to us, we don't get the point, just the "love"! My deepest hope is that I'll hear his sweet little voice saying Moma or Daddy!!! Until then we'll keep on trying to find the best way for him to share his ideas and thoughts with us!

As predicted.....

2011-08-30T21:32:00.001-05:00

Asa came down with Gracie's fun fever and sore throat! He was a real bear on Sunday and I took his temp under his arm. It was normal and being difficult isn't unheard of for him so we brushed it off as a bad day. on Monday he felt warm again but the underarm temp was normal agsin. By lunch I took a rectal and sure enough it was 100°. I'm not sure why I didn't realize before but he never has an accurate temp unless its rectal. Once the motrin was onboard and we were cuddling on the couch he was resting. I also put together that he had a sore throat. He kept asking for food and would put it in his mouth but wouldn't swallow, just pool it. He was also drooling, even though he had a pac. I know at nearly 4 he needs to lose the paci but without it he tends to sit with his mouth wide open and is drooly. Plus it keeps him quiet and me sane!

Today was better but he woke up early with his once a week poop that of course was a stinky mess! That started his day off with a bath and while he loves a bath first thing in the morning is not his scheduled bath time! We know how much he hates going off schedule or routine. Let me just tell you that he was no barrel of monkeys this morning. Nothing I did was right and I was trying it all! Thankfully he didn't have a fever all day so that means school tomorrow!

It also seems like this little bug has increased his motility. Odd, right?!?! He has been asking for food all day. He didn't eat much but he drank a million gallons of soy milk, water, ice, juice and tea. He's had the wet diapers to prove it too. Dirty ones too!!! We shouldn't have to use the Miralax tomorrow! The drinking and desire to eat is pretty great....the pooping, not so much!

I want to ask a favor of y'all. This has been a tough year for mito kids. Several families had to say goodbye to their little ones way too early. But then there are the rays of hope that shine through. One of our mito heros started the drug trial, EPI-743 in California today. I'm praying this drug will help his little body, that it gets a big green light from the FDA and that it helps all our mito kiddos. There's another ray of hope too. A 14 year old girl, Delaney, started a FB page to raise awareness for mito. Her brither, Grant, has mito and she is trying to get as many as people as possible to visit and "like" her page. It'd be great if you could spare a minute to check it out and click "like"! Thanks so much!

Delayed but quick update

2011-08-28T21:56:00.002-05:00

Wow, long time no post!! We are now the proud owners of high speed internet and Barry got Nexflix tonight. Why didn't anyone tell us that we'd been living under a rock?!?! We thought we'd be so excited to be in the real world but we've been too busy to toy around much. While browsing the available movies in Netflix I found several ancheit movies I want the kids to see. I'm sure they'll think my movies from the '80s are as cool as I remember them to be!

Gracie was sick a few days last week. On Wednesday morning she called from school saying she had strep. She hasn't had strep but she said that's what it felt like. And I agreed that the quick onset of a sore throat, headache, stomach ache and fever did seem very strep-like. The doc ran a swab but she took a shot without waiting on the results because it seemed so certain. Fast forward to Friday and she's still running a fever.... I called the clinic and turns out her strep test was negative! I also found out on Thursday night that Gracie had been using Asa's toothbrush.....because her's was outside! Don't ask me how her toothbrush got outside! I was certain As a would get this fun viral bug now! So far though he is fine, well, Asa fine!

Asa missed 2 days of school last week. I kept him out one day because Gracie just felt so bad that it wasn't worth getting her up and out for his 2 hour school day. And then once I found out about the toothbrush sharing I was convinced that he had the same virus and would contaminate his friends at school! And after 4 days home with me I'm pretty sure he is looking forward to school tomorrow! I know i 'm looking forward to it!

A couple of videos

2011-08-12T21:04:00.003-05:00

Here's a couple of videos. The first was at the appt yesterday. Asa scooted right for the sink! We mixed things up by playing with a paper towel too. He'd wet it and then wring it out and tear it up. I figure there's OT skills in there somewhere!

This one was today. I had an eye appt (I'm allergic to the contacts or something!). Asa was rolling all over the waiting room...and messing with buttons and lights and equipment! I'm just so glad he felt like exploring! Afterwards we had to get drops and special solution (I'm so going back to glasses if this isn't better when I go back next week!). We explored a little and Asa found a holla hoop propped against a rack. He grabbed it and started hulaing! So funny!

I wish I had video of another funny activity from today. I laid down in the floor and Asa scooted over to me. He laid his head over on my and hugged me. Then he started trying to get on his knees by rolling onto me. Once he was laying completely over me he started raising up on his arms. So he's in a mostly crawling position with me underneath him!!! He was mainly laying on my face!! And the drool, man the drool! He'd raise up and start wiping it off my cheek. I tell it was the sweetest thing!! Plus it was really good PT work since he can't get into a crawling position! At nearly 4 years old he can't hold a 4point crawl pose much less get it or crawl! I was gonna suggest we scrap that PT goal on his IEP but maybe he will be able to do it one day! Anyway, I sure loved the cuddles or wrestling or whatever he called himself doing! Loved it!!!

Sick...or NOT?!

2011-08-12T07:23:00.001-05:00

I took Asa to his pediatrician yesterday. For the last few weeks he has been really tired and just a little off in general. He hasn't had a fever or a cough or a runny nose, just not himself. I waited it out for a while then school started and his teachers started commenting how tired he was with the new schedule and I finally made an appt thinking that he'd snap out of it as soon as I had an appt! Well, he didn't snap out of it so I took him in.

It's kinda difficult to explain and I'm sure Dr. Woods thought I was crazy. First of all, Asa only goes to school 2 hours a day. He hasn't started therapy yet so he isn't having to do a ton of work although his teachers do put him in the gait trainer or the mobile stander. And get this, he tolerates the rolling stander better than the gait trainer. He'd rather be standing with his feet and legs all strapped in and pushing with his arms to roll around than in a gait trainer with a seat and walking around. Anyway, it's basically just playtime and he is DONE after a hour and a half or more!

Secondly, this started before school. 2 weeks before school. He started sleeping til 10:30 or 11 every morning after going to bed at 8:30 or 9. And then he didn't want to play during the day, he was happy to be held or to just sit on the couch with a book or in the highchair just hanging out. Since school started he's gotten up at 10:30. Eat breakfast, get ready for school, I drive him to school at 12, pick him up at 2, pick Anna up and we're home by 3. He them lays on the couch resting till Cade and Gracie come in at 3:45. Still he really just hangs out on the couch. Yesterday he laid there playing with his feet till 5 or later.

I guess it doesn't sound dramatic, and it's not, but it's definitely not his normal. His ptosis is also very noticeable in the afternoon and he has dark circles under his eyes. He is clingy and really just wants to lay around holding your ear! His motility has slowed too. He is having several gagging and nauseated spells a day. He seems be have gotten better at fighting it off though and we haven't drained as much as we were before but he is pretty miserable when it hits.

So I thought this was just a new normal for him but then I realized we'd messed with his diet this summer, he could be anemic. Or his ammonia could be high. Or he could be sick somehow. And then my mind wonders to the BIG stuff it could be! Thankfully it doesn't look like it's anything big! But it's also not anything small and fixable! Dr. Woods ran all kinds of labs and everything looks fine. Not perfect but only off a tiny bit. So I'm back to just be crazy and worried! I guess it's just a looong down time for him.

Asa did really well at the appt. He only cried when appropriate, he gagged at the throat swap but didn't puke, he gave the Dr. a high five and we were there for 2 1/2 hours! He did ALOT of sink playing and I have a cute video but I haven't loaded it yet....sorry! After the blood draw (which only took 1 stick, thank heavens!!!) I was gonna distract him with cartoons on YouTube but he doesn't really care for cartoons so I thought of a mito friend's blog. She recently posted a video that I hadn't watched so we turned to her kiddos. Asa stopped crying immediately and after only a few seconds of watching Emma laughing, dancing and talking, Asa started signing "love" over and over! How precious is that!!! We had to watch it 3 times. He also liked watching his own videos! Lol!!!

Animal House

2011-08-07T22:40:00.002-05:00

I'm not really an animal person. I guess I've had pets all my life they've just been the outside kind that you feed and pet but are pretty low maintenance! Unfortunately for me, we live in a drop off alley! I'm not sure why folks decide to leave random animals on our road but they do! Many times we feed the stray and call rabies control to get them. Some we do get spade or neutered and keep. Most recently we had 3 dogs that had been rescued by us at various times. One sweet girl got old and died. And just this spring a male was killed by other strays who weren't fixed so they bred and pack hunted! Gracie was the one who found the gruesome scene! Good times!

With a heartbroken Gracie and lone female dog left, we went on a search for a house dog! I had to be pretty picky about what dog we got because I have allergies, no desire to clean dog hair off furniture and Asa couldn't handle a loud dog. A vet knew a breeder who had a 1 year old male yorkie left and she only wanted enough to pay his shot fees!

Well, Zander has turned out to be Anna's shadow instead of Gracies!! Anna loves it and Gracie seems ok about it too. But then today....

We pulled up to church and someone had left a small, male well behaved dog! Gracie was in love and even though I don't love animals I'm not cruel so we brought him home, put him in crate and gave him water. Ok that's what I did! Gracie day dreamed about what she'd name him and where he'd sleep! She even got my dad to give him a bath!!

So I guess we now have 2 indoor dogs, one for Anna and one for Gracie. Unless of course someone else claims him!!

As if that's not crazy enough when I came in from church tonight Gracie and Cade were crawling around under the deck and in the over grown flower bed chasing 2 kittens! Apparently our Tom cat found a friend before we got him fixed!! The kittens only seem interested in our food and trash!

So, if anyone needs any pets you know where to go now!!!

Hi Ho, Hi Ho, it's back to school they go!

2011-08-01T09:32:00.001-05:00

Today is the last day of summer break! It's back to the grind tomorrow! Anna will be a freshman starting high school, Cade will be in 5th grade and Gracie in 3rd grade at the same school. Asa will start out in the same class as last year but transition to another school before Christmas.

The high school didn't have an open house or meet your teacher night. Apparently teenagers don't want or need their parents checking up on them and school! Suuuuure! 3 of her 4 classes are honor classes this semester. I was hoping she'd have 2 this semester and 2 next semester. I'm sure she'll be fine but I just hope she isn't so busy that she can't enjoy this new adventure! Lots of changes!!

We went to the Meet Your Teacher night at Cade and Gracie's elementary school last week. This will be Cade's last year at this school. I really love our school! The teachers are great and many live in the community or have been at our school for many, many years. I think this gives us a community school kind of feel. Many of Anna's teachers have had Cade and Gracie as they've moved up. I just love that about our school.

This year 5th grade changed up a bit. Cade is still in a class with kids he's been friends with since Kindergarten. Their teacher is new to our school and the kids will rotate between 3 teachers. Getting ready for Middle School! His homeroom teacher is young and pretty so we teased that 5th grade may be the year the boys actually will love going to school!

Gracie is thrilled with the teacher she got this year. All summer long she's said she is getting Mrs. Sanders. I tried to tell her that we didn't know who she'd have but she was insistent that she had Mrs. Sanders! Thank goodness her name was on Mrs. Sanders door! I'm pretty sure that she'd gone in and sat down anyway! On a side note, I told Cade that I'd go with Gracie to her class when they called 3rd grade and then meet him at his room when we finished. Gracie told me she wasn't scared and wanted me to go with Cade so she could go by herself and with a friend! So that's what we did!

Then went to Asa's open house yesterday. All last year he never really cried when I left. He'd cry when I picked him up, like he was just realizing he missed me! We started talking about school last week just to remind him. As we drove to the school I think Asa was remembering the route. He was looking out the window and doing a happy hum. As we turned on the road the school is on and saw the buses he got quiet though! We parked and got in the front door and all was ok. We went to his room and it wasn't ok!!! He started crying and wailing. I took him out of the wheel chair and held him. Still crying! His teacher came to say "hi" and he turned his face into my neck and cried "nooo"!!! First word?! It sure sounded like a real "no"!! He did go to the assistant but only for a second. He spent the next 10 minutes in a near solid cry and sob, getting all hot and red faced! He quieted down for a few rounds of a computer game but that was only for a few minutes. He did give both teachers a high five when we left! We left out the classroom door instead of going out the front so Asa's screams wouldn't frighten any wary Pre-Kers or Kindergarteners! I'm a little nervous about him tomorrow!

I'm gonna miss summer break, probably more than my kids. Don't tell them though! I'm gonna miss sleeping in, days with no activities, pool days, pj days and just fun, no work! I have a feeling that homework is gonna be a booger for all 3 this year. And after school time is the worst time of day for Asa! I'm really not looking forward to that! But maybe I'll be wrong!

Busy Summer Days

2011-07-21T10:10:00.004-05:00

We've been pretty busy around here! Cade has just finished up his baseball season. They went 18-0 in the regular season! They played hard in some post season tournaments. And this past weekend was the district tourney but the boys just didn't bring their A game. They lost the game that would have sent them to the state tourney. I hate to end the season but it's been a good, long run! Really, so many families had things going on that it seems not going to state was a good thing!

We went to a birthday party at Chuck E Cheese on Saturday. Asa has been there before but only during the week and never to a party. When the party got loud I took Asa up into the climbing and slide area. He loved being up high and was just laughing and laughing!

He didn't mind the big Chuck E and even gave him a high five! Still the birthday balloon was more his size.

On Monday, my mom and I took my kids and my nephews to see Cars 2. Asa has never been to the movies because he isn't into TV and has sensory issues. But since we never really know how he'll react I decided to try Asa in a theater. Well, turns out Asa isn't a fan!!!! He did sit and watch the Buzz and Woody short at the beginning but he was not a fan of Cars. I had tried to prepare him for the show by telling him we were going to watch a big TV and it would be loud so we'd cover our ears. As I'd "cover our ears", Asa would hold his cheeks instead of his ears! So cute! It didn't help that it's 100 degrees here! Asa was over stimulated and gagging and hot so I drained his tummy and tried to take him into a store to cool off. Ha, the store wasn't even cool. After the movie we went to pizza place and I went to the bathroom to change his diaper. As I washed my hands Asa splashed in the sink! Why didn't I think of this before....the sink calmed him, cooled him off and kept him happy! Next time I'll remember that!!!!

Yesterday, we went to visit my SIL and took a nephew home. They just moved and have a splash park nearby. Asa wasn't a fan of the big sprays or getting splashed but he did like sitting and playing with this little fountain. They sprays didn't stay on but were activated by the kids. It seemed like the kids just ran from station to station to find the water. They exhausted me! Hehehe. We finished off the day at the neighborhood pool!

All in all, it's been a busy few weeks and we are tired!!

The Holy Alphabet

2011-07-09T23:16:00.001-05:00

The Holy Alphabet

A lthough things are not perfect

B ecause of trial or pain

C ontinue in thanksgiving

D o not begin to blame

E ven when the times are hard

F ierce winds are bound to blow

G od is forever able

H old on to what you know

I magine life without His love

J oy would cease to be

K eep thanking Him for all the things

L ove imparts to thee

M ove out of "Camp Complaining"

N o weapon that is known

O n earth can yield the power

P raise can do alone

Q uit looking at the future

R edeem the time at hand

S tart every day with worship

T o "thank" is a command

U ntil we see Him coming

V ictorious in the sky

W e'll run the race with gratitude

X alting God most high

Y es, there'll be good times and yes some will be bad, but...

Z ion waits in glory...where none are ever sad!

So when life throws you a curve, remember, that the shortest distance between a problem and a solution, is the distance between your knees and the floor. After all the one who kneels to the Lord can stand up to anything!

My friend Debbie posted this on her son's blog tonight and I just had to share! Isn't it great!! Please pray for Debbie and Hudson. Hudson battles horrible seizures. Because of work, Debbie and the 3 kids live several states away from her husband and the 3H's father. They are enjoying some good family time as one unit this summer. My prayer is that Hudson continues to do well, the seizure monster is better controlled and the family can have a fun summer together under one roof!

My thoughts on Roger Clemens

2011-07-06T23:24:00.001-05:00

I know you all are waiting patiently to find out what I think of this whole situation. After all, I am a leading authority on all things baseball since I do have 2 All Stars! What do you mean Ponytail softball and 10 year old little league aren't the same as professional baseball?! Ok, it's true. I really don't know much about professional baseball. I can only tell you a handful of players and even then I probably know more about their personal lives than professional career!

At any case I'm gonna share my brilliant train of thought that came to me as I took my 10 minute shower. That's where I do all my deep thinking! There's no telling how brilliant I'd be if I took bubble baths!

So I started wondering how we can live in such a double sided society? Why are we wasting precious time and money investigating baseball and steroids? Do we really care if he was taking steroids? I don't think we do. Don't we show up to games hoping to see the big hits? The no hitter games? I mean don't we all remember following the count as Barry Bonds was on his home run quest several years ago? It was a nightly countdown on all the major nightly news! Ticket sales kept increasing as he came closer and closer to the big one. Did anyone care if he was using illegal drugs? Not really they just wanted to see the big hits!

We are a society of results. We pass off all kind of rule bending and plain ole rule crushing. We celebrate celebrities who are drug abusers or those who abuse women. No matter how bad the sin, we still buy the book, go to the movie or upload the newest record to our iPod. Perfect examples of that are Charlie Sheen or Lindsey Lohan. Have you ever seen a more perfect train wreck than the two of them but still they remain on top of the world! How messed up are we!

And then there is the whole fact that Congress is the one investigating! I'm not sure I'll ever understand that. Don't they have better things to work on than a major league baseball player using drugs just to give us what we want?! Didn't we elect these people to go to Washington to work for our benefit? We've already established that it is us who WANTS the players to shock and awe us.

So I think I've come up with the perfect solution! If we legalized steroids for professional players and tax them high, it'll be a win-win-win! We get our big show, the franchises get tons of money from ticket and merchandise sales and our country gets bazillions in tax dollars! Our national debit could be paid off before the 2012 election eliminating a million campaign commercials....HA, another win! And if no one wants to claim the tax money then I'm sure the UMDF would take it to find a cure for mito!

And to think that I came up with this perfect plan in just 10 minutes! Can you tell I'm just a little tired of all the superficial celebrity and athlete worship we do in this country! By the way I'll let you know when I decide if I'm running for President in 2012! I'm still designing the campaign bus! :-)

A Special Trip

2011-07-02T20:10:00.003-05:00

"LOVE"

When Asa was born, 3 3/4 years ago, I found myself in a situation I'd never been in before. The doctors first used the word "hypotonia" and having no idea what it meant I came home and searched the Internet. It means floppy muscle tone if you don't want to google yourself. I'd never used the Internet very much. Mostly shopping and some coupon sites. Once I started opening the websites that had anything to do with "hypotonia" an amazing thing happened. I began to "meet" and share and love families who have kiddos who have floppy tone too. I learned so much about how to get my little guy to sit in carseats, strollers, grocery cart from people who have been there and done that. And that was just the beginning! There was constipation advice....it takes muscles to move that stuff out! I learned chewing and biting advice. I learned tips to catch the drool. There is so much to learn. It didn't stop there. There are developmental delays, feeding tubes, oral aversions, sensory disorders, speech delay and non-verbal. I've "meet" some awesome people!!!

And then there was the mito diagnosis. I learned that from my online buddies too. It wasn't one of the 5 specialist we were seeing who mentioned mito. It was my online friends! Boy, were they smart! And I've fallen in love with so many little kiddos that I've never met in person. Little guys that I've celebrated for, lifted in prayer and grieved for. Seems crazy to have such a relationship with a computer and pictures, doesn't it. But it doesn't to me!

I've met a few of these families in person over the years. A few in Houston on our doctor trips and a few are local to Nashville so I've met them at the mito meetings there. And this weekend I got to met another great family!

If you remember a few weeks ago I requested prayer for a little guy, Zach Moody. His body had gotten so tired of fighting mito and infections and after a week on hospice care he passed from the arms of his family to the arms of Jesus. Shortly after that his mom, Jen, asked if we'd like his wheelchair for Asa. Can you imagine a more giving and loving heart?!

We are trialing a chair for Asa and had just measured and gotten an order together for the very chair we were using. I called the DME and asked him to stop the order. Now you may wonder why we'd want a used wheel chair that was 6 hours away instead of letting insurance pay for a new one. Well, I'll tell you! First of all you are blessed to not know this info! Secondly, insurance will only pay for a chair every 3-5 years. Asa's Kimba stroller is considered a wheelchair. We got it about 2 1/2 years ago. We were pushing our limits even asking for anther one and there's a chance they'd turn us down anyway. Also I really think a power chair will be in Asa's future. "Future" because right now if he has power he thinks its a hoot to run over stuff! If you count it out he probably won't be eligible for a power chair until he is closer to 9 or 10. Now maybe he will have the strength and stamina to push a manual, or even better WALKING, but I'm being realistic here! Sooooo, by not accessing Asa's insurance for another chair we will be able to get him a power chair sooner! Can you imagine him with complete access!

So back to the Moody's! We said "yes", we'd be honored to have it. And 6 hours away is a nice road trip away. We planned on taking all the kids and having a little adventure but as I priced adventures, I quickly realized that it's pricey to entertain 6 folks!! Then Anna suggested she watch Asa and they could spend the night with my mom! I know....generous offer for a teenager but I'm sure it was partly because she wants babysitting money for new school clothes! Anyway, my mom had already offered so after some thought I accepted! A road trip alone with my hubby!!! Just me and Barry!! For 2 days! In a car for 6 hours each day. Wait a minute.... Just kidding!!

So Barry and I headed out and after 6 hours driving (and tons of traffic!), we meet Jen and Adam for supper before we headed to our hotel. When I first mentioned this trip to Barry he said "won't it be weird to meet someone from the internet". But I felt like I already "knew" Jen in a way. And I was correct! They were just as kind and easy to talk to as I'd thought they'd be. We all got along great and I truly enjoyed the meal. Well, maybe not so much the meal because I was so busy talking that I didn't even realize that I wasn't eating! Time just flew by. After we finished eating, we went to the parking lot and they got out Zach's chair. It looked like the perfect size for Asa and is a great chair. Even more special is that it came from a thoughtful family who wants to keep their son's memory alive and bless others like they've been blessed. I'm so honored to be part of it!

When we got home today and I put Asa in it for pictures he was so funny. We'd say "do you love your new chair" and he signed "love". He can push it on the carpet a little too. It is great support and Asa's been just sitting in it for a long time tonight. We are so thankful! Today would have been Zach's 4th B-Day so in celebration of Zack here's a few pics:

"Hmmmmm"

Thank you, Jen and Adam!!

And on a side note.... Barry and I are so old and married that we took full advantage of the 2 double beds in the hotel! We each slept in our own bed! I'm so not kidding! Best sleep ever, I didn't even roller over all night! Barry woke up and said "we really need a new mattress because I've never slept so good". I think it's because we had our own beds! hehehehe

My softball star

2011-06-29T08:38:00.002-05:00

Gracie has just finished an great season of softball! She has always loved playing and has some natural talent that obviously doesn't come from me! When it came time to sign up for spring ball, she said she didn't want to play though. Being the good mom that I am, I signed her up anyway! Turns out she is glad I did!

This is Gracie's league team. Bless her heart, it seems like every season she is on a team that is in a building year. Most of these girls were new to softball and they only won a few games but they learned and improved soooo much! Next season is their season! I'm really proud of her team and coaches. Each girl just improved every game!

Her great coaches got the girls a trophy at their last game. Isn't that why you play ball, for the cool trophy?!

Gracie really improved this year. The week of her 8th birthday she hit her first home run. And she hit one nearly every game after that! She loved this and would grin from ear to ear. And don't think she needed the boost in confidence. She is quick to tell you that she is the best hitter, best fielder, fastest runner and she can jump tall buildings! And that goes for any sport! She is the best smack talker ever. Again, I don't know where she gets this! hehehehe

Near the end of the season we got word that she made the All Star team! She was so excited. The only problem was the regular season wasn't over yet. That'd mean double practices and double games. Plus Cade plays and Anna and Asa have activities. We had to decline for my sanity. But just after the season ended, the coach called back to see if Gracie could play. And she has loved it!

Yes, I painted my van! Barry and Anna didn't get the "G-softball". It should look like "Go Gracie Go". Oh, well.

Her team came in 3rd in the district, not making it to the state tournament. I'm proud that Gracie learned and held her own with these girls who are older than her.

It was a blast but I don't think any of us are too sad that the season is over!

Don't worry though, Cade's All Star tournament starts July 15th so we aren't completely away from the ball field for another few weeks!

Let Summer Begin!

2011-06-22T22:40:00.002-05:00

Asa finished up summer therapy today. He won't have therapy again until school starts back in early August. I don't think he's ever had a month off from therapy in his 3 1/2 years! I'm sure we'll stay plenty busy though so no need to worry that he'll get bored!

Asa is still drinking the Elacare! Sometimes even signing "more" after his cup is empty. I'm still trying to get used to mixing formula again. I nursed all the kids mainly because I'm too lazy to wash bottles and mix formula, yet here I am, still doing it!

Asa went to his first All Star game tonight. Well, technically he went on Monday too but I kept him at the van. Tonight I got him out and we sat on the bleachers for the game. Monday I had all the seats laid down, the DVD ready, a picnic planned and a blanket in the shade. And still all Asa did was fight me to go to the fence!!! I decided not to wrestle him today...plus it was cooler and only 85 degrees!

He really had a good time. I kept an ice pack behind him in the stroller. He drank water and had a snack. He scooted on the bleachers and the concrete! He played in the dirt and had filthy hands that got onto his dirty face! He had a big time. Gracie's tournaments start on Friday. I hope he is up for a full weekend of ball!

I'm proud of both Cade and Gracie for making All-Stars. I won't lie though. I tried to talk both of them into passing on the games! It's just a lot of practice, a lot of games and a lot of running. It's also a lot of fun but only if they enjoy it and aren't begging to skip practice or whining about the games. So far so good! Neither took the bribe to skip so I guess they mean business! Who passes up the beach for ball?! :)

Oh and if you don't follow on FaceBook....I found a buyer protection plan for the laptop and they tell me that even acts of idiocy is covered! I still won't believe it until I see it! And I never, ever buy those warranties! I was digging in our "junk drawer" when I found the receipt and pamphlet from the office store. I called and told her what I'd done and she said no problem, I'd bought the "premium" package! Now I can't imagine that I bought the premium but that's what the receipt says!!! So I wait on my box to pack up the busted one and cross my fingers it's as good as it seems!

Thanks guys for the comments!!

2011-06-17T07:09:00.001-05:00

Thanks guys for the comments!!

Asa drank 3 cups of Elecare today! And it is the vanilla flavored. It actually didn't smell too bad...I didn't taste it though!

Rose-Marie, I was sooo close to blending food when he was tubing. Now that he is eating orally though I'm just trying to make do with our table foods. He just has such a poor bite and tires when chewing. Liquid is definitely easier for him to take in.

Clarrisa, google blended tube feeding and there are a few sites and tons of blogs that offer advice. At the very least I was thinking of tubing babyfoods. Dump in a meat, 2 veggies and a fruit and you've got a healthier meal than most kids eat! :)

As for the Reglan, he has been taking it for a year. We were to start at one dose a day and increase to 3 times if we needed to. We have not increased. I haven't seen any side effects.

Jana, we tried some samples of the Splash. He would not drink the grape! He did ok with the other 2. The GI didn't like using the Splash for his nutrition. She said it lacked some of the nutrients of the Elecare. She did say that we'd use it before we used the tube for feeding.

And for the output... I noticed an improvement the first few days if going non-dairy! He started going on his own with no meds for the first time in forever! They were hard but not nearly as painful it seemed. Today was the first day of Elecare and it was very, very loose. I'm not sure that was really a good thing though.

Sorry if this post was TMI! Lol

Please remember the Moody family in your prayers. The laid little Zach to rest today. And the Hilliard family. Eithene celebrated an early birthday on Monday. They have now stopped all antibiotics and only using comfort meds.

And this weekend is the weekend of the Mito Symposium in Chicago. I wanted to go so badly but we had so many things going on I changed my mind. I do hope my friends who are there are taking thorough notes!!! Hint, hint!

GI appt

2011-06-16T08:34:00.000-05:00

So about the GI appt! Is it dairy, is it not dairy?! Is it reflux, is it not reflux? Is it dysmotility?! And what about the tube he keeps pulling out? Did he loose too much weight?

Let's just say I had a lot of questions for the GI NP! I had more to talk about today with GI than I've had in a while! I'd already emailed back and forth so she knew what was coming!!

And can I just say that I'm so thankful for Ayer's Clinic!! The Vandy docs come down and it saves me 6 hours of drive time! The nurses in the clinic are beyond sweet to Asa since they've seen him for 3 1/2 years now!! He can rule the roost if he wants to!

Anyway back to the appt! Asa has lost 4lbs in the last 6 months. While that doesn't sound like a lot when you take into account that he's supposed to be gaining you can see the problem. He went from 40% on the growth chart down to 4%! wow, nearly FTT again! He did NOT need to be at 40% but 4% is too low!

He actually looks pretty good. He is easier to carry around too. But he has stopped sitting up on his own. And forget about trying to get out of bed or even scooting around. These things aren't good if it's from the lack if good nutrition I can help fix that!

Since he can't have Pedisure because of dairy then we are going to try Elecare orally. He'll have at least 2 cups a day plus all his other foods. Hopefully he will drink it from his straw cup and he'll gain weight. If that happens we'll try to do without the Reglan. Maybe what we thought was dymotility was just an allergy. He never had motility testing done. They just tried it and it did help some. If the Elecare, weight and no Reglan works well then we'll talk about taking the tube out!! Not for at least 6 months though!

I'll start the Elecare tomorrow. I'm praying he will drink it. He doesn't and can't eat enough to sustain him. He needs the Elecare! He'll drink it! Right?!?!

Stupid....stupid in love!

2011-06-15T22:43:00.003-05:00

I will be blogging from my phone until at least Christmas. It seems that I tried to give the laptop a flying lesson and it failed!

Asa had a GI appt this morning and we were a few minutes late leaving. I had Asa in my left arm, stuff in my left hand and the laptop in my right hand. It was actually a last second decision to even take the laptop. I knew I was gonna have an hour or more in between appts and thought I'd work on some VBS stuff. So at the last second I grabbed the laptop without putting it into the case.

Once at the van I had to lay the laptop on the roof so that I could open the door on Asa's side. I opened the door, emptied my hands and put Asa in his seat. I buckled Asa in, got in myself and took off. It was only after I got a few houses and the laptop fell of did I realize I'd left it on the roof!!The lights still come on but the screen is gone!

Surprisingly I'm not that torn up about it. It was stupid for sure but I'm not having a pity party. We won't be able to replace it but I'm ok with that. How weird is that?!

Now let me tell you why! Asa woke up so happy this morning. He was full of hugs and ready to eat. He was very vocal, doing lots of "aaaaa"'s. He took a bath and played and grinned up at me so happily! Since he was vocal, I'd mimic his "aaa". We had little "aaa" conversations! As I "aaa"ed, I realized it sounded like my "I". I've been trying to get him to sign "I love you" for a while. I kept saying "I love you" when I'd start a mimic "aaa" conversation.

As Asa was sitting on the couch waiting for me to put his clothes on him I started signing it again. And he did it back!!!! Keep in mind I only had 3 minutes to get Asa dressed and into the van for the appt but I said "phewy" to that and videoed his new signing skills!!! Some things are just more important than others!

Here's a link to the video on YouTube: http://www.youtube.com/watch?v=Obj-ntX65yI&feature=youtube_gdata_player

And honestly if that's not enough to put me on cloud nine, I was over the moon when Asa gave me hugs and kisses as I buckled him in the van. This is VERY different from the normal screaming and screeching he usually does while getting buckled in.

So see, you can tell why my mind wasn't on the laptop. But also why I'm not torn up about the computer! Having those little hands communicate with me was divine! Getting the hugs and kisses that back up the signs is miraculous! And I'm not using those words lightly! I do consider it a gift from God each time Asa shows affection and contact and an awareness of my world! Not everyone is given those blessings. Worse yet is the people who don't know to appreciate those blessings. If only they knew....

So goodbye laptop but hello communication and love!! Ha, communication through technology vs communication with my boy?! Which do you think I'd pick?!

2011-06-10T08:00:00.000-05:00

I've had so much I've wanted to blog about but it's been so long that I'll just hit the high points.

First of all, the food allergies! The blood test came back positive for food allergies and negative for environmental allergies. The scratch test came back negative for food allergies and positive for environmental allergies. Despite these misleading results we decided to go a week without diary, soy, tree nuts and peanuts. After a week off we added the foods back. Really just the diary. He never really had nuts anyway.

During our off week things went well. Asa didn't eat enough to feed a fly and lost 2 lbs but other than that.... He was pooping on his own, even if they were little golf balls and difficult, he still did it without meds or screaming. There was much less gagging and no puking! NO puking! I even squished his leg in a grocery cart and he cried and cried but no puking!

So Sunday we added dairy back. A cup or two of Pedisure every day. After a few days Asa puked 30 minutes after drinking a cup of Pedisure. There was no trigger, just a puke. Since then he has been gagging in the morning. He has been ill and a pain. He has puked a couple of times. And he is beyond constipated today. If you were in Walmart this afternoon and heard the screech and screams of a little kid that made your ear drums burst...that was us! I felt so bad for him but what could I do!

Our directions were to withhold the dairy again and then again. See, off one week and on another so we can be certain it is dairy triggering the symptoms or some random trigger. I'm thinking we are NOT starting it again. Of course we are NOT giving him dairy now. Hopefully, we will have that happy tummy back again. We see the GI on the 15th to discuss the weight loss and a plan.

We ordered Asa's wheel chair this week. We've been missing the DME and communicating through phone calls. We have been trialing a Quickie Kidz for a while now and are getting it. I thought we were ordering a new one but today the DME said his understanding was that we were buying the one we are trialing. It was new and hadn't been used so that's fine with me. Just means we get to keep it now and not have to wait. If you haven't seen Asa chair it is the cutest thing ever but it doesn't have a parent handle, like a stroller handle. That means that I have to bend over to push him along when he gets tired or distracted. I requested one of those, a firm back support and a different foot rest. The DME immediately said he had a handle in the store! Good to know now! He put it on today and added a longer seat belt so that we can buckle it from the back since Asa learned to unbuckle! We were trying the new system out in Walmart before the poop attack occured!

In some hopefully pretty awesome news, there is a new announcement in the world of mito. EPI-743 is a drug that's been used in a few cases of mito where death was imminent. Since it is still so early the trials there had to be a known mito mutation to even be considered for the trial. Many mutations are not "documented" as disease causing so this eliminated a large number of people who suffer and could benefit. Once example is Piper. Even though so much of her medical history pointed to mito she didn't have a "known" mutation. She couldn't get the drug and she died. Her doctor is speaking on the reasons to change the rules for compassionate care and has a very touching video on YouTube. It is a bit long but Piper's story is in the last 15 minutes, I think.

So now the FDA is giving EPI-743 Orphan Drug Designation. ODD is reserved for diseases that have fewer than 200,000 people affected in the US. Mito affects 60,000. That is reason #1 to raise awareness for mito. It is highly suspected that many more are affected but only mildly so no one looks for mito. Anyway, with this new designation many more people will be accepted into the trial. It is still a study so there are criteria but I'm hopeful for Asa and others that we know. To be clear, it is NOT a cure but a possible treatment. Only the sickest of the sick have been tested and they haven't had miraculous turn around but they have done better. I'll be email the Dr. for sure but we've been warned to be patient. You can imagine there are many seeking info. By the way, Dr. Koenig in Houston sent us a pretty generic letter stating the info and that our child may be a candidate so we should contact the doctors. Her clinic isn't participating but just like I suspected her clinic got the info before the Vandy dr. did. Or at least she passed it on first. That's why we have a mito specialist!

Ok that catches you up on Asa...mostly. In other family news, Gracie made the All Star team for her 7&8 year old coach pitch league. She is beyond happy and I'm already seeing it'll be a busy summer! Cade also made the All Star team for his 9-10 year old kid pitch league. Yep, that's double the practices for both kids plus tournaments and games in different cities at different times all of June and July! Good times!!! Gracie plays in her first big tournament on Saturday. I'll be excited to see how she does!

Oh and VBS is next week too!!!

Pics, please!

2011-06-01T11:20:00.005-05:00

Thanks for the support and love about the last post! I'll be short on this one! Hahaha

We took Asa's loaner wheelchair into Target last week. The whole point of the chair was to give him freedom but since this chair doesn't have a parents handle it is impossible to get it across the parking lot in a timely manner. Asa knows to grab the wheels or stick his feet on the wheels to keep from going where you want him to go! Since I had Aana, Cade and Gracie with me I decided to give it a try. The chair fit perfectly in the Target buggy and made for a great supportive seat for him in the buggy.

This is where he went once he discovered his new freedom!!! Just like a man!!

I call this "Feeding the Beast but Keeping the Peace"! Asa LOVES water!!! Loves it! He wants to kick in the pool everytime we come in the back door. He loves the bathtub. He loves the sink! I've been known to sooth him at tough dr appointments by letting him splash in their hand sink. So when the scream and squealing gets to be too much at home I make him a splash pool in the kitchen floor. It keeps him happy for hours but I'm not sure it's a good idea to feed his obsession! Another plus to this plan...if he splashes and scoots enough I get my floors mopped!

Walmart was giving away samples of some green tea. Asa took my cup and sucked it down and the did the same to Anna's! He was shaking holding the little cups and drank with his pinkies up for a long time! And yes, I did buy the tea bags and that's what he drinks at home now!

A broken heart and a new identity

2011-05-31T22:35:00.003-05:00

I've heard several messages and speakers lately talking about self esteem and self worth, about the need for identity and knowing ones self and one place in life. The latest time was just this Sunday. A singer and pianist came to our church. At the age of 6 he was run over by a lawnmower and his left leg had to be amputated. His father was a basketball coach so he identified as a sports star but that identity no longer fit. He discovered the piano and went to college on a scholarship and had a successful career in Branson, Missouri as a member of a quartet. He travelled the country with the quartet until he had a car accident and it paralyzed his left arm. He thought that was the end of his identity as a performer. Amazingly though he can still play and sing and perform with an artificial leg and a only one arm! He was great!!!

So tonight while I was laying down with Asa I started thinking about my identity. Before Asa I was a perfectly functioning person. I volunteered at the school. I worked in my church. I could carry on a full conversation. I was thankful and grateful for the blessings in my life. I was aware of how blessed we were to have a healthy family. I could parent, teach, play, cook, eat, enjoy activities with friends. I was a normal person!

Then when Asa got here the water got mucky. It was a crazy, strange world. Nothing worked like it was supposed to. Cooking, playing, working were all different and hard. Nursing, changing diapers, baby play was all different. I lost my confidence. I lost my identity as a Moma. It was no longer easy or very fun!

As we learned more about Asa and issues were piling up not lessening, I began to realize that the identity I'd painted in my head was not going to be. There would be one less on the ball team, one less in the school play, one less in VBS. Our family identity would be different and my identity would be different. And it was heart breaking! And I let God know all about it! It was a long conversation on my end, short on His! I finally just gave up the complaining and whining and gave my broken heart to God.

And God did what God does so well. He took my broken, lost heart and He healed it. Not only did He heal my heart but He made it better! He didn't just put the pieces back together giving me the same worn out, used up heart but he remolded and reshaped it to be more like He desires it to be anyway. He caused me to be able to see the positive and the good in my situation. He showed me blessings in the struggles we endure. He made my heart more like His heart.

Tonight I couldn't help but wonder what else He could do if I gave more of my broken self to Him so He can transform more of me. Why am I trying to find my own identity and not letting God show me what He can do? Why do I doubt my abilities and not just trust what God gives me? I am His perfect creation after all. He is the authority over me. He has proven His faithfulness to me time and time again. The only mold that I need to fit into is the one He has planned for me. Afterall I kinda like this identity!

Now if I can just remember all this tomorrow and the next day and the next day and the next day!

Speed bump

2011-05-29T22:04:00.002-05:00

This has been a tough week. Just when I think I've got it all figured out and things hit a good, even stride we hit a speed bump!

Most pausing was finding out early in the week that our mito friend Emma had died. She had been doing very well so the news was really shocking. Emma was 9. Such a doll. Please keep her mom and dad and 1 year old brother and sister in your prayers. As hard as this week is I can't help but think that the next few will be just as rough. Once the friends and family go home, once the daily routine gets going again. Once the medical equipment has to go back. Please pray for Karrie and Jason.

At the visitation on Friday I found out another mito friend, Jackson, wasn't feeling and was running a fever. By Saturday morning he was in the hospital fighting an infection. His fever has been down and he seems to be better so I'm praying this will be a quick visit!

These are both kids who moms I adore! Don't get me wrong, the kids are amazing but I admire their momas so much! These are ladies who I enjoy getting to meet for extended meals every few months. Ladies that I could talk to for hours. Ladies who I wonder how in the world they get it all done....then I remember it's because they have to and failure is not an option! I love these momas to pieces and pray for them daily. To see them hurting and struggling is not what I wanted!

And in very minor terms considering what my friends are going through, we found out that we need to completely change Asa's diet. I am by no means comparing a minor bump in my own road to the huge road blocks my dear friends are meeting but it is a bump for us still.

Asa is 99% Pedisure feed. He drinks 3 or 4 cups of Pedisure a day. He eats bites or nibbles a few times a day but I'm usually just trilled if he will put something in his mouth! I'm not worried about the calories or content because he has the Pedisure as his main nutrition. Pedisure is dairy based though and allergy testing (via blood test) done in Houston in March showed the Asa is allergic to dairy. Just to be sure though we saw an allergist locally who did the stick test on Friday. Well, he is still allergic to dairy. Along with peanuts, pecans, soy and cats! On and some grasses but that can be fixed with meds.

For the dairy we will remove the allergens for a week. After a week try the foods again. See if we notice a difference. So we began reading labels and trying new foods! Asa has been so happy to try new foods lately so I'm hoping this will be the push I need to really, REALLLLLY, try real food.

I'm not sure it is going so well! For breakfast this morning he had 1/2 a pancake and a cup of Rice Milk. For lunch he had less that 1/2 can potted meat and 1/2 a banana. He also had a applesauce pouch and a handful of Poptart bites. Add in 1/2 cup of apple juice and a cup of tea. That's it for today. How many calories do you think that is? He has already lost a tiny bit of weight since we've dropped from 4 cups of Pedisure to 3 about a month ago. I'm ok if he looses some weight but I don't want to create a problem!

An alternate option is to try an elemental formula like he was on before. I'm not sure he'll drink it orally though. He may, he seems to lack taste buds! Since he is trying to eat more and try new foods then I'm really hoping this will be the push we need get him eating real food! I've just got to get creative and I'm feeling very lazy and creative!

And I'll say again. These are all just minor, minor issues compared to what my friends are dealing with so please say a prayer for them all!

A sad day!

2011-05-24T18:38:00.004-05:00

So much has happened in the last week that I need to catch up on but first I have some sad news. A sweet little mito friend died this morning. I met Karrie and Jason with Emma on our first trip to the Nashville mito meetings right after we got a diagnosis. Turns out they are from Memphis and Karrie has been a part of my mito moms breakfasts, lunches and dinners since!!! Karrie is one super moma and an amazing advocate! Emma was blessed to have these 2 parents! I can't tell you how special they are! And Emma is one sweet little girl. Such a fighter! She'd given us all a huge scare back in the fall but was doing well when passed away this morning. Just so sad! Join me in praying for peace and comfort for Karrie, Jason, their families and Emma's 1 year old brother and sister. I'm just having such a hard time finding words!

In other news:
Anna is a highschool freshman, Cade is a 5th grader, Gracie is a 3rd grader and Asa finished out his first year of school. Last week all the schools had awards days. Anna won perfect attendance (but skipped awards day for her fear of being recognized!), Cade won a Citizenship award and Gracie won an award for making A's and B's. Asa's class had a awards day but it was in the morning and he is an afternoon kid. It was also just to recognize the kids who were graduating into Kindergarten so Asa and I didn't go. When I picked him up from school that afternoon, I was surprised by an award for myself!!! Asa's teachers recognized me as a great parent! How nice is that!!!

Asa has his stick test with the allergy doctor on Friday. Can you even imagine how excited I am about this! I'm sure it'll be fine and you just do what you gotta do but it won't be pretty! Asa has gone a couple of weeks with no puking episodes and just this week started it up again! I'm sure having a dozen needles poked into your back will induce puking. The plus side is it should give us answers and force me to be strict about Asa's diet. I've been so wishy washy about the no diary, not really wanting to make changes until after the tests.

I'm sure there was much more news but I'm so distracted that I can't recall. Maybe tomorrow I'll just go through my pics and see if I can come up with more to post.

Wordless Wednesday: First class picnic

2011-05-17T19:05:00.001-05:00

Mito families are my heros!

2011-05-15T22:39:00.004-05:00

I had a mito moms breakfast/brunch/lunch today. We did call it off before the supper hour this time! That's not always the case. I'm not sure how time flies by so fast! We are pretty convinced that given the right resources we could solve our mito problems and the world's problems too. We decided long ago that mito will be conquered not by the FDA, Washington DC or Merck and Pfizer. We'll defeat mito around the breakfast table at Cracker Barrel or the lunch meetings in the mall food court or on the support message boards and FaceBook and mostly in elevator rides with innocent medical students while riding up to the 10th floor! Yep, mito momas, daddys and grandmas will be the ones to stomp mito!

I have been pretty bugged by something during our meeting though. Each time I think of it I get all jittery and jumpy in my stomach. I should have done something, I should have done more than something. In the end though I'm not a confrontational person. Not generally anyway. I envy those momabears who can really stand up and fight. I also roll my eyes and shake my head at those crazy momas who roar at any and everything and can't be taken seriously. I think I have the type of personality that is all or nothing. If I start roaring it may turn into a roar about the weather or the day of the week or the way my water glass was one ice cube too short. So instead I mostly don't roar! I let people in line in front of me, I just replace my slightly dirty fork with a clean one from the next set, I pick at my steak that could be cooked a little bit more. Still, there are times for roaring! Today was one of them!

My friend Emily had to bring her son Jackson with her. You know if there was anyway possible she would have avoided loading a 46 pound kid, his 45 pound wheelchair, 2 or 3 inhalers, meds, feeding tube, formula and water! But sometimes it just can't be avoided and Jackson is a ladies man so it was a treat to have him with us. As she left the back wheel of the wheelchair got hung a little on the chair of a lady next to us. The nicely dressed church lady turned and looked crossly. As Emily tried to dislodge the wheel the look continued and the church lady made no move to help move her chair. Neither did her companion, the church man in his nice suit. Once the wheelchair was free, church lady huffed and straightened her chair. All of this took about 30-45 seconds but every time I think of it I feel my blood pressure go up. I asked shockingly if Emily saw this and she replied "all the time". Seems people also don't take the time to hold doors open even for wheelchairs.

I've chastised myself for not saying something. For not standing up for Emily and Jackson. In all likelihood Emily would not have wanted me to cause a scene. What would likely follow would be pity and no one wants pity. A better outcome would be thankfulness. An appropriate outcome would be for church lady and church man to be helpful instead of hindrances and then be thankful that they don't have to load, unload, load and unload a 46 pound kid and his 40 pound wheelchair and a backpack full of supplies just to have a couple of hours for breakfast and friendship. Thankful that they haven't spent the last 3 weeks fighting with a diaper company to send out the proper diapers for a 4 year old. Instead having to settle and buy Pullups whose main function is to catch a small amount of pee while letting the kids feel the "wetness" of the rest of the pee. In a wheelchair bound child this doesn't help with potty training but helps in soaking the clothes and wheelchair with pee. Yep, church lady should be thankful!

And that's what I should have told church lady and her church man. And all the other diners who stared instead of speaking and smiling to Jackson. Jackson loves the ladies and has a smile that'll knock your socks off! That's what church lady missed with her soured face and disgruntled huff. I pity her!!!

And while I'm on my soapbox.... Don't use the word "retard" or "retarded". Unless you look into the face of "retarded" everyday, don't use it. If you don't see it written in numerous clinical notes to describe someone you love, don't use it. Unless you are speaking medical talk or rebuilding a motor, leave "retard" in the closet.

And that concludes my public service announcement and soothes my soul for today!

One more week!

2011-05-14T20:16:00.002-05:00

We only have one more week of school here! Yay!!! I'm so excited that you'd think I was a kid.....or a teacher!!!

The last 2 weeks has been full of Field Days, Picnics, Water Days, Tug of War day, fun, fun, fun! Asa had a field day at school. Then other days he was at school I got to go play with Cade and Gracie at thier school. That never would have happened with Asa because it was so hot here last week. I so enjoy the 2 or 2 1/2 hours that Asa has had school. I will miss those few hours a day!

This final week of school Asa is having a picnic and water/sand day, Cade has a field trip to a minor league ball game and then Cade and Gracie have awards day on Thursday. I can't believe the year will be over. I'll have a 9th grader, 5th grader, 3rd grader and I have no idea what Asa's rank is!

I guess this has become the most boring blog of all time since there isn't much going on with us. Maybe we'll take an awesome, exotic, tropical vacation.....but don't hold your breath! :)

Some going ons....

2011-05-06T06:00:00.003-05:00

First of all here's a couple of videos.

First of all I stayed at Asa's school yesterday for Field Day. They had all the pre-K's out in the morning but since Asa is in the afternoon class it was just his little class in the gym. That was probably best because they said it was pretty loud with the bouncy houses and tons of kids playing. Asa liked the bouncy house ok. It must feel pretty weird to be loosey goosey and the have the world under your feet moving too! But the video isn't about the bouncy house! After we got back to class he played on the computer. That has to be one of his favorite activities and a reason I think he'd love an iPad! I videoed him playing a new game using the touch screen or the button.

Next was taken earlier this week. After school Cade was filling up the Water Blasters and Asa was squirting them. He was soaked by the time he was done and it was cool but his laughter is priceless! I should have made one of Cade trying to be sneaky and shooting the dog because he knew I was videoing Asa. Boys!!

Now on to some medical news. While we were in Houston in March Asa had a ton of blood work done. We saw immunology for the first time ever. While Asa has been very healthy apparently one of his labs from our June 2010 appointment showed that he may have an issues so we were set up with Dr. Pacheco. She also ran allergy tests. While Asa has some soft signs of allergies (red eyes, rubbing eyes and nose, sneezing, eczema) it is nothing that interrupts life so I just assumed he has allergies to trees, grass, pets like the rest of us! His environmental allergies came back pretty normal. Imagine that!

But some food allergies popped up. Milk and pecans was in the High range. Soybeans was in the Moderate range and peanuts was in the Mild range. Asa's diet is 95% Pedisure that he drinks from a straw cup. Pedisure is a dairy based formula. It also contains soy. So it is a possibility that the Pedisure is making him sick. Could it also be contributing to his GI issues? I expected to see GI issues with a food allergy. Cade and Gracie both had bloody stool while nursing if I was on dairy. I simply eliminated diary and the problem went away. Once Asa started Pedisure we tested some stool samples and they were normal. He also had an endoscopy and biopsy right after starting it and both were mostly normal, no signs of allergies. And Asa was on an elemental formula for the first half of his life and he still had GI issues. So, what does all that mean?! It means that on May 27th we have an appointment with a local allergist for a skin test. Hopefully that will give us more info. We are also trying a diary/soy free diet. This is harder for a non-eater who relies on formula. There are several elemental formula options but they are pretty gross tasting. We could go back on the tube if he won't drink the formula. We haven't used the tube for feeding since October 2010. That's 6 months!!! We use it daily to drain and a few times for meds.

In my mind we'd see different issues if he was allergic to dairy. I picture the bloody stool Cade had or a swelling throat like you see in severe cases. But I'm sure an allergy could produce the gagging, puking, constipation the we are seeing and have been seeing for a long time. I guess the good thing about this is that Asa isn't a big eater so there are less foods to take away. He does like yogurt and that has to go. Also cheese slices. And peanut butter and banana but since the peanut came back we'll avoid that too. I can't say the he has ever had pecans before though!

As for the immunology stuff....it came back wonky too. We can do a booster vaccine and then redraw labs in 4 weeks but after giving this some serious thought and talking with Asa's ped here we've decided not to do this. Asa is so healthy. He is rarely sick and when he gets sick he bounces back pretty well. I'm afraid to go messing with something that isn't broken! We can always revisit this if things change. Dr. P herself said she doesn't just go by lab results alone but looks at the whole kid. So we will take her advice and wait.

So now you can see that just the trip to Houston and the mito specialist doesn't really end when we leave that wonderful city! I should brag on our local team here too! When we couldn't have Dr. Koenig's labs done in Houston, Asa's ped set it up for here. Then one test had to be done special at the hospital and he arranged all of that. I talked to his about the immuno work up too and he has the same thought as me so we will wait on the booster vaccine. I am also in contact with the GI at Vandy on the formula stuff. Our ped set up the skin tests here. It really is a group effort on all of Asa's care. So far everyone is great at working together and they all seem to really take my opinion and thoughts into account too. I can't tell you how important I think this is! I am the person who is with him day in and day out. I do kinda think that I know him pretty well!

Our new addition

2011-04-28T17:17:00.003-05:00

Meet our newest addition to the Wilson household! His name is Zander Cage and I guess we'll keep it even though Cade and Gracie can't remember it! Anna thinks it is original and cool, not plain and boring like her name! She says Gracie would pick out a boring name. Just because she named her goldfish Goldie and Sunshine. Those were the final names...it changed so often that she had to make a list and keep it beside the aquarium! I'm not even kidding!!! So Zander it is!

Ever since Gracie found our outside dog dead, she's been talking non-stop about getting another dog. We've never had a house dog but since the outside dogs are getting attacked and killed a house dog it'd have to be. When you take into account that I'm allergic to most all animals plus Asa's sensory issues and my desire to not have to clean up a ton of hair or poop, our choices were going to be limited! I've been doing my research and hit on a couple of breeds that fit our family. They are also pricey!!! This week I took Gracie by a local puppy breeder and let her look around. I was surpised when she went for the 2 yorkies running around. I thought she'd want a fuzz ball like a poodle or Biscon breed. Nope, she was stuck to the yorkies. These 2 were not for sale, one was the owners dog and the other was just bording. In fact there were no yorkie pups at all right now. Oh, and the owner mentioned that her yorkies run $500! HA, not happening here!!! I started searching some rescues because I also decided that the chewing and house breaking of a puppy was not something I really wanted to do!

Still unsure which breed would be good for us I started asking at the pet store when we bought fish. I asked a few vets. And when we picked our cat up from the vet (after his snippy appointment!) I asked them. Turns out one of the tech's mom had a yorkie she needed to get rid of. She had a mother yorkie and had kept a puppy but then started working 2 jobs and out of town so she really didn't have the time and attention for the puppy she'd kept. She only wanted $50 to pay for the vaccines! It was more than that to adopt from the shelters. He has papers too....whatever that means for us since we aren't breeders. So without telling the kids, I went back to the vet today to meet the little guy.

He is a year old, housebroken, quiet, friendly but not jumpy.....and ours! When all the other dogs in their kennels were barking and whimpering, Zander wasn't making a sound. When I held him he snuggled in for a cuddle. His only drawback, I was told, was that he didn't like a collar! He chewed them all off! I bought him a harness and he has been fine. I also bought a kennel since I found ours broken as we got ready to take the cat in.

I picked Anna up from school first and she was so surprised and excited! Asa was next but he was clueless. He noticed but was just his usual screaming, ill self on the way home. We waited for Gracie and Cade to get off the bus to surprise them. Zander was under the car and peeked out at them. By this time Asa had gotten sick and was screaming, the loud bus pulled up and our outside dog was very curious! Poor little guy was a bit overwhelmed! We got him inside and he has made himself right at home!!! I predict he will be spoiled rotten by night fall!

Asa just liked the new kennel! The boy loves boxes and he had a blast with this until he dropped the lid and startled himself!

This is what the final stage of a startle episode looks like for Asa! Passed out and draining! Right after he dropped the lid, Zander came over to see what the screaming was about and Asa was in no mood! He has since made friends and with help even rubbed the dog! I think both would just soon avoid the other. Asa is too loud for the dog and the dog is too soft and fuzzy for Asa.

So tonight I hope we all rest well!! So far everyone seems to get along fine! Let's hope it lasts!!

On a side note, when we told Cade we were taking Toby the cat in to be fixed, he was irrate!! He tried to hide the cat in the clothes dryer, in his room, in my closet and called me a "animal hater"! By the time we left the house he was near tears. No matter how much we told him we were helping Toby, he was just mad! I took him inside the vet so he could see it was a fine place with good people. I'm not sure why it affected him so much unless it was a male bonding thing. When we got Toby home and Barry saw that they actually remove the boy bits he was upset too!! What's with these guys?!

Milestone Celebration!

2011-04-27T21:15:00.002-05:00

Asa has been making some great inchstones and milestones lately and I need to be sure they are all down and recognized!

A few weeks back Asa started sitting up in bed by himself. I was so excited to go into his room and see him sitting up in bed! Then he started sitting up and OUT of bed by himself! The first time he was in his room playing. The second time I was getting my camera ready so I could record myself going in there with him out of bed and before I got to him, he came scooting out of his room! Then this morning I slept in and as I got up I heard him in the hallway at the bottom of the stairs. He was sitting but was stomping his feet on the floor. Gracie and Cade were upstairs watching TV so I assumed they got him up. When I asked though they said no, they didn't get him. That means that he got up and out of bed, out of his room and to the bottom of the stairs where the only noise was coming from! Smart kid! He just better not be planning any middle of the night roamings!

He has also gotten really good at the wheelchair. And very brave! After church Sunday we were finishing up the nursery and missed him. He was rolling down the hallway and into the foyer! Did you remember it was Easter Sunday and the place was packed!! Apparently the crowds parted for a 3 year old in a wheelchair and he headed outside! I found him happily rolling down the drive thru driveway....backwards! Don't panic there was a trusty adult there to stop him from crashing into the parked cars!! Seriously, he was having a great time! He'd push up the little hill and then let go of the wheels so he'd roll backwards!!!

He also rocked at the Easter Egg hunt on Saturday. While the big kids were busy he used the wheelchair to push a little ping pong ball around on the gym floor! I see wheelchair Olympics in his future! Do they have a wheelchair X-games?!

And his tolerance for crazy, loud, busy environments is amazing to me! The egg hunt was busy and loud and he did great. He spent a lot of time in his chair rolling around with everyone. Then he spotted me and was clingy while I needed to be busy! I ended up putting him in a little chair along the wall and he just sat and watched all the action! The best tolerance was last Thursday at Gracie and Cade's ball games. Gracie played at 5:45 and Cade at 7:30. We have to be there by 5:15 and Cade's game went until 9:30! Asa did amazing!!! He staying in the jogging stroller for a long time. Then he walked with my mom. Then back into the stroller for a while. He scooted along the bottom of the bleachers for a while and was happy to sit and rub the concrete! And he ate! Boy did he eat!!! He had some Cheerios bummed from another little boy, a sucker, some hamburger bun, some of a fry, Pedisure and 3 cups of Gracie's Gatorade!!! I just knew he was gonna be sick but he wasn't at all!

His eating has not been so great lately. He is willing to do the Pedisure but he isn't very adventurous with other oral things. And we've been having to drain a lot too. I need to start tracking this!

Thanks for celebrating with us!!!

Happy Birthday Gracie!!

2011-04-21T22:29:00.003-05:00

I've got several blog posts in my head and one is even typed and ready to share but a more important event needs to come today! Today was Gracie's 8th birthday! I got to take birthday cookies to school and hang out while the kids did their Easter Egg hunt. Seeing Gracie in her school environment was really fun.

Gracie is one of the most unique girls that I know. She has always done things her own way. She has no fear of bugs or blood or guts. She doesn't scare away from any of the grossness of Asa at all. She even attempted to change a terribly stinky diaper all on her own....as a matter of fact she did change it by herself, there was just poop smeared everywhere!

She is also a huge tomboy. From an very early age she just kinda fell in line with Cade and assumed the role as his equal! When she was 4 I even caught her trying to stick through the deck rails to tinkle while in her swim trunks. She didn't understand why her pee went down her leg instead of the streaming off the deck onto the plants below! She still loves her swim trunks but now she does wear a swim top at least!

For as tough as she is, she is also terribly tender hearted. She loves animals. All animals! Just a few weeks ago we were leaving our house to ride out a tornado warning in my parent's basement. She broke down because we couldn't carry her fish with us! This whole thing with her dog getting killed is terrible for her too. In case you aren't my FB friend (and why aren't you?!) then you don't know that last weekend Gracie found our dog killed by dogs who are unleashed and have pack like behavior. Apparently the attack happened on Thursday afternoon or Friday and Gracie found him on Saturday afternoon. It wasn't a pretty sight! She has had trouble sleeping and keeps talking about it. She also thought her teacher was gonna get her a puppy for her birthday today! Getting another dog is not an option right now because the other dogs are STILL not being leashed! Anyway, my Gracie is an animal lover!

She is also so funny! She says what's on her mind, even when she'd be better off keeping her opinion to herself! She is so blunt and honest and innocent that I can't help but laugh even though she is telling me how old and fat I'm getting! She told me on Monday that she wanted me to make the same softball cookies I made for her last year. They are scratch cookies so there is mixing, rolling, chilling, cutting, cooking, cooling, frosting, packing, etc. I couldn't get the icing the color I wanted and Gracie just sighed and said "it doesn't really match but it's ok, just do the best you can"! She doesn't understand sarcasm though! Too bad that is like my second language!

And she doesn't lack self confidence! She will readily tell you that she is the best reader in class, the "hottest" girl in the school, the best ball player on her team and just generally the best of all things in the world! And she isn't just blowing hot air. She believes it! She lives it!!! While Cade was playing ball tonight she was playing "wall ball" with a group of boys, some older and some her age. Then they got out on an empty field and she pitched and fielded for them. Then she took her turn hitting! I'm amazed at her ability to hang with a group of boys but not just to hang with them but also have the upper hand! She was the only girl!

I've enjoyed watching her grow this year.....physically, emotionally, intellectually and spiritually. She started off this school year with no desire to read and was not that great of a reader. She has improved so much and even likes to read for fun now! Of course she has grown taller and stronger too.

By far the hugest milestone of her past year was that she gave her life to Christ! She is a Christian and I couldn't be more proud! What a blessing and I can't wait to see her grow and learn and I wonder how God will use her!

It has been a wonder 8 years with my sweet Grace Eden Marie Wilson! I'm so blessed to be able to call her mine while we are here on Earth together! And yes she has 4 names! Would you expect anything else from someone who named thier kid Asa! We selected Gracie because we truly feel like God's grace has given us much more than we can ever deserve or even imagine. And Eden came in when our pastor was teaching about the perfect Garden of Eden. It seemed fitting since baby #3 would be our last and complete our family....or so we planned! Anna insisted that Gracie had to have Marie in her name since Anna does too. So she does!

Happy Birthday my Gracie!

I Am the Disabled Child

2011-04-20T23:39:00.001-05:00

I am the child who cannot talk.

You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's stardards...great strides in development that you can credit yourself. I do not give you understanding as you know it.

What I give you is so much more valuable...I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.

I am the child who cannot talk.

I am the child who cannot walk.

The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the top shelf. I need to go to the bathroom... oh...I've dropped my spoon again. I am dependent on you in these ways.

My gift to you is to make you aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness.

I am the child who cannot walk.

I am the child who is mentally impaired.

I don't learn easily, if you judge me by the world's measuring stick. What I do know is infinite joy in the simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life.

My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity.

I am the child who is mentally impaired.

I am the disabled child.

I am your teacher. If you allow me, I will teach you what is really important in life.

I will give you and teach you unconditional love.

I give to you my innocent trust, my dependency upon you.

I teach you of respect for others and their uniqueness.

I teach you about the sanctity of life.

I teach you about how very precious this life is and about not taking things for granted.

I teach you about forgetting your own needs and desires and dreams.

I teach you giving.

Most of all, I teach you hope and faith.

I Am The Disabled Child.

~~Author: Unknown~~

I HATE mito....

2011-04-18T20:51:00.002-05:00

This seemed to be the theme of my Facebook today. Various mito friends were going through different struggles and trials. I was having my own "I hate mito" moment this morning.

I've gotten pretty used to Asa's issues. Some are constant, some come and go and some just pop up from nowhere. And then there are a ton of issues that we have never had to deal with, for which I'm grateful! But this morning had me shaking my head in disbelief at how something so normal and random could affect my little guy so much. What would normally be no big deal is turned into a big deal by mito!

And so, I HATE mito because.....

Asa went to bed last night around 9pm. I heard him waking up and playing around 8:30 this morning. He never cried for me but I got him up around 9am. He was sitting up on the edge of his bed (love this milestone!). I gave him his Prevacid, cleaned him up and sat him in the recliner. I got his cup of Pedisure, which he gulped down by 9:30am! I offered an applesauce or a yogurt but he refused. He sat and played with his laptop while I did laundry and cleaned out a closet. Around 10:30 he started screaming in pain. I looked in here and he was red faced, doubled over trying to poop! I picked him up and comforted him but he was in pain, pushing and gagging from all the work to poop. He finally settled and I changed him. I changed a whole little half dollar size ball of poop! All that effort for nothing! I laid him back in the floor and went back to the closet. He never settled and started struggling again. This time while I was rocking and comforting him, he dozed off. Before he got all the way to sleep, I change him again....barely anything again. As I was changing him he dozed off. Once he was changed I laid down in his bed with him. He was gagging and coughing but was asleep in just a minute. He ended up sleeping from 11am-1:30pm. Just making 2 tiny poops was enough to completely deplete him and he slept for 2 1/2 hours!

I know there are a million other reasons to hate mito....and I hate mito for all those who struggle in so many ways. But this was just a big reminder that mito sucks in so many ways.

Asa made up for his lazy, sleepy morning this afternoon though. After we picked Anna up from school he played and played outside. He sat on the edge of the pool and kicked his feet in the water. I pushed him on the swing set. He bounced on the trampoline. He sure didn't want to come inside!! I can't say that I did either!

A busy week!

2011-04-15T22:45:00.000-05:00

We have had a busy week and several ups and downs. On Monday Asa woke up early with a fever, snotty nose and mucusy cough. I took his temp under his arm and it was 99. He felt much warmer so I did it rectally and it was 102. I tried a forehead reading and got a totally different reading! I've noticed this when Asa is having heat issues but I need to have an accurate reading when he is sick!

I watched him closely Monday. He had fever again at 2 pm but his nose had dried up. He was super clingy and took 2 naps. He was a good eater though! By evening though it became clear that his belly wasn't emptying fast enough and he was full and sick. By evening I was pretty sure I'd be going to the peds on Tuesday. I was thinking he could have strep or ear infections or sinus yuck or my fav, something viral.

But when Asa woke up on Tuesday his fever was gone! In fact his rectal temp was 97.4! He was still tired so I didn't send him to school. He felt well enough to tear up a roll of toilet paper, empty the silverware from the dishwasher and pull the pots and pans from the cabinets! He ate the Pedisure well too but again, by evening it was clear that his tummy wasn't functioning well. Yuck!!

By Wednesday we were back on schedule! Asa did go to school but he had a rougher day. They had to drain him at school too.

On Thursday I did some work outside early in the morning. Asa played on the sidewalk and tried to scoot into the dewy grass. I put him back onto the walkway twice but the third time he scooted through the overgrown flower bed and into the taller, wet weeds. When I tried to get him up he pushed my hands away! Silly, adventurous boy!

He has still been having dry sneezes, coughs, red eyes and he often grabs his nose and face like it itches. Dr. Pacheco, the immunologist and allergist we saw in Houston, still hadn't sent me the blood tests results. I called last week. She gave him a script for Zyrtec but I didn't want start it until I had the bloodwork. So I called again today.

Shockingly all the environmental stuff came back normal! He isn't allergic to the trees they tested, grasses, dust mites, cats, dogs, etc. I think we live in the allergy belt of the US and Asa isn't allergic to any of them! Yay!! He is however allergic to milk and pecans. And peanuts and soybeans had a slight elevations. Now Pedisure is milk based so this is odd and confusing. Dr. P had said that if something came back high yet he eats it without trouble then we keep letting him have it. I'm not sure if the itchy eyes and nose, eczema or puking are related but this is interesting! I can't wait for Dr. P to get back in next week so she can walk me through this.

There was also something about his immunity but I still need clarification on this too! See the first part of this post and then tell me that he has trouble with immunity! I'm sure Dr. P can help me understand this. She is so amazing! Very easy to understand!

Oh and on the school front, when I picked Asa up Thursday and he was wheeling down the sidewalk, instead of turning towards the van he continued going straight and pushed to the door of the next classroom! The door was propped opened so he opened it on up and got the attention of several kids and the teacher. I was so surprised that when they came over Asa didn't shrink away but instead reached out to play with a little boy and his toy!! And today as I chatted with the teachers he rolled away and was exploring in the toy cabinet! I love to see him playing!!

What a cute monster!

2011-04-07T20:13:00.000-05:00

We've created a monster!

I took asa to school today. I got out his wheelchair. I put him in it and unlocked the brakes. He wouldn't go in! I finally tried to push him in and he grabbed the wheels and wouldn't let me push him in! His speech therapist was coming in so she tried to get him to follow her. NOPE!
He did take her hands and put them on the seat belt so she'd unbuckle him! She did and he walked with her hands to the grass but he was not going in! I finally just picked him up and carried him in and then go the wheelchair in!

Who's idea was it to give him independence?! I love it!

I also think he is getting the hang of sitting up on his own. For Monday's nap he sat up twice by himself. Then last night at bedtime he did it two times again. When I went in to get him this morning he was sitting up near the edge of the bed fussing at me!!

I think the wheelchair may help him walk. You'd think that by getting a chair we'd be giving up on walking but really it is doing the opposite. Pushing is building his upper body strength and coordination. Having the ability to easily explore is giving him some independence and adventure. When he walks now, he is using me less and less. And that's a win-win for sure!

On the pudding front..... Asa pooped about 7 times the next day! So no more chocolate pudding for a while! Or at least not 2 cups! You know I've got to give it to him again to see if he can handle it!

Too much!

2011-04-06T06:21:00.002-05:00

Sometimes too much of a good thing is a bad thing.....no, a BAD thing!

Asa really only eats his 3 cups of Pedisure a day. We are on a roll if he will eat some real food at supper or snacks during the day. Some days he won't have anything other that the Pedisure and some days he'll have lots of food and we take away a Pedisure. Yesterday he was an eating machine!

He had a Gogurt tube for breakfast with 1/2 cup of Pedisure. Before we left for school he also had 1/2 of an applesauce cup with some Nutella mixed in and a cup of Pedisure on the way to school. This alone was a great feeding day! I'm thrilled to get in applesauce OR yogurt.

Now fast forward to 2:30pm and school pick up time! I walk in to him in the wheel chair with a huge bib on, surrounded by dirty towels and sick and gaggy. Turns out he wanted a chocolate pudding cup while at school. Then he signed "more" so he had another pudding cup. Then he tried a raspberry icee thingy. He was filled to the gills and overflowing! Oooooppps! See, I didn't tell the teachers how much he'd eaten at home and he kept signing "more" so they gave him more, who wouldn't! Bless their hearts!

We got to the car and all that chocolate started coming up before I could get the drain bag hooked up. He was so exhausted and pale and nearly lethargic on the way home. I began to wonder if he had a bug because he looked so sick. After we got home and he napped some more, he perked up and was good to go by this evening. He had a cup of Pedisure at 5pm and again before bed. I was hesitant about that bedtime cup and stood firmly on a NO when he signed "more" after it!! Learned that lesson all ready today!

Bless his teachers hearts though! I would have done the same thing. It is hard when a kid who won't eat really wants to eat "more"!! I've overfed him here too. And they didn't know what he'd had before school. I also think he was tired and maybe getting too warm. It was the perfect storm really! His teacher called to check on him tonight. I think she felt bad that he got sick and I felt bad for them that he puked and got so sick for THEM! I told her he does that nearly everyday and I hated that they had to deal with it. Last night I also wondered if it was the chocolate from the pudding. We've had a few issues with chocolate and I will pick vanilla over chocolate for him. His teacher said she thought they had vanilla. I suggested they repeat the feeding but with vanilla and see if he gets sick! Hahaha, she said NO THANK YOU!

I really love Asa's class and his teachers! We had a chat yesterday about next year. I agree that he doesn't really fit in this class anymore. I feel so blessed that he had this adjustment time though. It is a small class so they can do more. And Asa has made huge, huge strides since October! They say that everyone has fallen in love with him! I love to hear that! And Friday, they took a walk in the hallway with his wheelchair and he rolled down the hallway waving at everybody. These good reports make my heart happy!

Oh and when Cade and Gracie came home from school, I had Asa asleep on me in the recliner and he was hooked up to drain. Cade came in and said, "What is that?", pointing to the chocolate filled bag. I told them it was pudding. Gracie said, "How'd he get pudding in there?"!!! See, we just aren't used to him eating! :)

Surprises!

2011-03-30T20:54:00.005-05:00

Some days are just full of surprises! Around here that isn't usually a good thing! Surprises are usually stinky, smelly, sticky and all around yucky!

Some days though surprises are good and fun! Today was full of those surprises!

Asa woke up happy this morning. With my help he rolled over and slid out of bed, landing on his feet. He stayed standing and his upper body laying on the bed for a while and then he straightened up and stood just leaning against the bed. He seemed so strong!

After a diaper change, it was breakfast time. Sometimes a cup of Pedisure is too much to handle but this morning when I asked if he wanted some yogurt instead, he got all squeally and happy. Asa was so happy and talking and having the best time so I decided he should try to self feed the yogurt. He took 2 bites in between the bites I was giving him and I decided to get this happy morning on video! It isn't too often we get happy, chatty, eating mornings!

At noon Asa went to school and I commented about how "talkative" he was this morning and too bad it wasn't speech day!! His speech therapist did step in and we chatted. She said he did some great receptive language stuff yesterday.

I was not gonna bother with this detail but I will because some of you moms might have non talkers and need this tip. You know those pics from the PECS boards? Well Asa's teacher has some that are laminated and on popsicle sticks. Things like happy, sad, home, school, etc. Now Asa loves flags and sticks so this was right up his alley! After teaching him not to grab at all of them, it seems that he was pretty good at making the selection she was asking for. We use flash cards at home but he does seem to get bored with that so this idea is pretty fun and easy for us to make at home!

Anyway, when I picked Asa up at 2:30 I noticed the DME truck in the parking lot. When I got to the classroom, Asa was sitting with his teacher and the cutest, tiniest wheelchair was beside them!!! Asa had not been in it yet so I was so excited! Asa actually pulled out of the teachers lap and while holding my hands he walked all the way around the chair and back to his teacher. It was like he was checking it out!

Once the DME got the seatbelt on, we put Asa in and he took off!!! I was so happy and only thought to take out my camera when Asa's teacher commented that she didn't have her camera!!! I'm so glad I did get his first moments on video. I'm also bad about taking still pics when video would be better. And sadly I only use my cell phone to capture precious memories! But, I did get the video!!!

Asa was so excited! He pushed right away....I missed that part on the camera! And he made 2 big turns by himself to push over to the door. I can't imagine what he could do with open spaces!

Once we got home he pushed around the kitchen some but the carpet was kind hard and he was pretty tired. Gracie started pushing him around and he loved it!! The more he laughed the faster she went! Not dangerous, of course, but faster than he could do himself. We pretended that he knocked me down and he thought that was hilarious! Then he tried to roll over me!! I guess we shouldn't teach him to drive like that but he was having so much fun. We'll get to the rules of the road later!!

And just to be clear, this chair isn't ours. It is a loaner for us to trial, to be sure he can use it, likes it and we want to order it. I have to say that I think he likes it. We'll have to use it for a week or so to be sure it will be useful for him. I love it. It weights around 15 lbs, I'm guessing. It fits in the back of my van without breaking it down at all. It is growable. I'm not sure of the weight and height limits but Gracie sat in it and looked good. Cade looked pretty big in it! So if Asa can and will use it I'm ready to order! We may issues with the insurance. Asa got a Kimba adaptive stroller in May 2009. That's only 2 years ago. But at the time Asa was barely sitting up. It had to be pretty supportive. I can't believe that he can now sit up, scoot, walk with support and now push a wheelchair. I just pray the insurance will see how great his development is and how he needs to be cognitively and socially challenged by having his independence! If they don't then I may have a kidney for sale! Ha, just kidding but I did hear you get some decent money for plasma! ;-)

Blessings, Part 2!

2011-03-30T00:32:00.002-05:00

I really thought I was done after last night. But God just keeps putting stuff in front of me that brings me back to this point. I also think that the title may be misleading or misunderstood at first glance. Maybe it should be "Sufferings?". Yes, with a question mark. Aren't some of our biggest blessings also our biggest suffering? Who are we to question what is a blessing and what is suffering?
I'm a member of a message board where a lot of parents have kids with special needs. A recent comment/question had to do with faith or a lack of faith. Is it bad to question God and wonder what He has in mind for your life? Does God show favoritism and heal some and take from others? If you don't get your prayers answered in the way you want, does it mean you are doing something wrong or not asking properly? So many questions and there is no simple answer.
And then we saw Dr. K and my focus shifted from how different Asa is from other "typical" kids to how much different Asa is from other mito kids. It could be said that we have been given a blessing by having Asa to be so healthy. I won't argue with that!!! But do I think that our family has done something to earn Asa's health? NO!! At one time we were on a parallel path with several other kids. In the last 2 years many of these kids have taken a different path from Asa. A path full of hospitalizations and procedures and interventions. So did our family say the right pray and so God granted us health? Were MY actions good enough to earn Asa's health? Did I "name it and claim it" for Asa's health? Or more in my character, was it my constant begging and nagging?
And finally, our church bullentin had some of my favorite verses on the cover Sunday. It was a selected passage from Job.
So let me give you a few lessons I've learned from God's word and His actions in my life. The first verse is at the bottom of this blog, Jeremiah 29:11. I find comfort and stregth in the fact that God has a plan for me. And it is not a plan to harm me but a plan of hope and of a future. "Future" means ongoing, not ending in me! And I've shared my feelings on this verse in detail before so I won't waste your time going over it all again.
But just because I have accepted that God has a plan doesn't mean it is easy peasy now! But I do know that God is with me and leading me along His path. All I have to do is follow along and not get distracted with what is going on around me! And just like Moses said in Exodus 33:15, if God's presence doesn't go with me, then I don't want to go! And when Moses questions how he will know if God is really with him, God shows him! God places Moses in the crevice of a mountain. He goes before the crevice, announces Himself as Yahweh, covers Moses' face to protect him from the full glory of God and then uncovers Moses' face so that Moses can see His back and know He was there!! Can you imagine being Moses!!! I have not seen God's face but I know for certain that I have seen His handiwork! Not as it has happened, most of the time, but only after a time of reflection. What glory would I get if I was just able to see God work! Instead I'm usually busy with my work and not looking for God's work.
And finally there is my reflection of Job. I love the book of Job! On one hand, I just want to shake my head and feel pity for poor ole Job. But on the other hand, I look at Job and think what a blessed guy he was! I'll sum it up if you haven't heard it before. God removed His protection from Job despite (or because of!) the fact that Job was "a man of perfect integrity, who fears God and turns away from evil". Satan could take anything from Job except his life. And boy did Satan do just that!! He took his livestock, his family, his wealth and servants, and even affected Job's health nearly to the point of death. I find it funny though that Satan didn't remove Job's "friends" from him! Once all is taken from him, Job starts to question and justify himself to God. My favorite part of the book is chapter 38. I love it when God brings on the holy smackdown....that's my words, not Job's! God asks were you there when I established the earth (verse 4), or closed the sea in (verse 8), or commanded the morning (verse12), or sent out the lighting bolts (verse 35)! Now really can Job or any of us argue with that!! Job responds in Job 42:2, "I know that You can do anything and no plan of Yours can be thwarted"! And that leads me back to Jeremiah 29:11 and God's plan for me.
Why should I question the plan? And even futher, how dare I question the plan? And I don't say that lightly! Of course I do question and wonder but in the end I recall and study the passages I've given you here. I hope that maybe you can relate and use these verses and lessons too.
And one other point, I've found that since I've had struggles I've grown in faith. Before Asa I would say I had faith that God could move my mountains. Looking back all I had in front of me was a grain of sand. Even now I feel I only have mole hills but I've seen God move them so yes, I do think he can move true mountains!! Be wary of someone who tells you that you don't have enough faith or XYZ would be removed from your life! My thinking is they've never had an XYZ in their lives!!
So blessings or struggles? I say blessings! What about you?!

Blessings

2011-03-28T21:41:00.003-05:00

I haven't been able to get this song off my mind for a few days now. I think each time we have a big doctors appointment I really start to think again. It's like most days are just our normal and I don't have anything else to compare it to. Then we have an appointment and we start getting the questions again. Not that I mind the questions at all. I love questions. I love to raise awareness and spread the word about mito. I can and will talk to anyone who seems interested....just ask my family! But it also brings a realization that we are different. Our blessings aren't the blessings of others.

I can't complain about our trials with mito. We are blessed that Asa has been so healthy for so long. There are no huge issues to be dealt with at these doctors appointments. He is following his own path for sure! For these things I'm beyond thankful! But if we wake up in the morning and Asa is miraculously healed then you won't hear me complain either!

This song helps remind me that my plan is not the best plan. Things won't go the way I want them to go but the struggles and disappointments have also brought so many blessings. I've learned more in the last 3 years than I did my first 30 years. God has opened my eyes to blessing and His hand in so many ways that I could not even begin to list them. God has taken every one of my weaknesses and made me stronger. He has pulled and stretched me but instead of breaking I've gained a stronger faith that I'm not alone or out of control.

"We know that pain reminds this heart
That this is not, this is not our home
It's not our home"

I think these lyrics are my favorite of the whole song. While I'd love to have the "normal" that this world offers, I love even more the struggles of now for the "normal" of Heaven later! In fact I think the struggles make me long for Jesus even more. When I hear of the disasters happening more and more and all the signs of the end times, my first response is "yes, Lord, let it come"! Is that crazy to wish for tribulation and trials? Not when you know how the book ends!!! And I have assurance that I will overcome and be victorious!

I have even more peace since last week Cade announced that he gave his life to Christ. He has told us this many times before but he would never confess it before our church. And yes, he did this while Barry and I were 650 miles away in Houston. But again, God's timing not mine! In any case I can rest assured that my family will all be rejoicing at the feet of Jesus when the time comes. So why worry and stress about the rough times now when our eternity is gonna be so awesome!!! Yes, Lord, let it come!

Mito What 5K

2011-03-26T21:18:00.002-05:00

It was a dark and stormy morning.....

That is NOT the way you want to begin the long awaited day of a huge 5K! And don't even get me started on the fact that is was now 40 degrees with a windchill in the upper 30's! But still, we got everyone up and headed to Millington for the 2nd Annual Jackson Culley Mito What? 5K at 6am!! We drove down the interstate in wind and rain while praying for clear skies for race time!

We got to Millington, picked up our registration packs, unloaded a canopy to keep us dry and waited for the race. During all of this the rain had turned from a full rain to light drizzle and then stopped by race time!!! At 9am, there was NO rain! It didn't pick back up again until the last of the runners were coming into the end zone!!! Praise God!! It wasn't exactly 70 and sunny but it was warmer and dry! Thank you Jesus!

Now, I had been wavering between doing the 1 mile fun run/walk or the 5K. I finally decided on the 5k but then the trip to Houston completely knocked me out of any running and training. Mostly I just sat in a van or in the waiting room the first part of the week. I still kept my goal though and was just gonna walk the 5K. As we started out though the kids were wanting to run so off we went. We all ran and walked for a while. Then the kids kinda dropped off and I really wanted to see how well I could do if I tried. So after the first mile I ditched the kids and took off! I finished the 5K with a time of 41 minutes! I'd really like to think that I could have done better if I'd started out really trying. In reality I probably would have only shaved off a few seconds! Still I'm pretty proud that I finished at all!! And I should add that the track was well marked, lined by volunteers and police escorts and Cade and Gracie were with my 19 and 14 year old nephews. I didn't totally ditch them in the middle of nowhere!

The best part of the day was seeing all the people who turned out for mito. There was over 350 signed up before the race and 50 who signed up this morning in the cold, wind and rain!! And the last total I heard was $17,000!! $17,000 was raised and sent to the UMDF for mito research! Can you believe that!!! I can't imagine how much work it must take to organize such a hugely successful race! All that is because of Cindy Kraft and Angie Hayes! The story of how these awesome ladies found Jackson Culley and mito is amazing. And these ladies work their hineys off to raise money for a cure for a disease that they had never even heard of 2 years ago. It isn't everyday you meet people who give so much and ask for nothing in return! Thank you so much Angie and Cindy.....and their amazing friends and family who help out and make everything run so smoothly!

I love to see my mito friends and today I met a new family. They are from Millington and lost their daughter to mito (specifically Leigh's) in 1987 when she was 6 1/2. In 1987 there were only 50 known cases of Leigh's in the world, according to the dad. Can you imagine?! They didn't even know what was wrong with Jessica or what took her life until a year after she passed away. And we think mito is unheard of now. I can't imagine trying to find answers and doctors when there were so few documented cases. It really makes me feel like I'm making a difference by raising awareness for mito. I hope this family is proud that we are working so hard to help spread the word about mito so maybe no other kids have to be taken by a disease with no name!

Thanks to all those who sponsored me in my quest to be a Mito Hero! And thanks to our family and friends who turned out in such yuck to walk/run with us!! Can you believe I didn't even take a single picture?! Oh, well there's always next year!

Houston Day 3

2011-03-22T18:54:00.002-05:00

Whew, I knew today would be a long day but I didn't realize just how long!

I had a massive post ready, hit post and it disappeared!!! I can not do it all again!

Dr. K was awesome as usual! We need to follow up with the eye doc at Vandy because something weird is going on. She ordered bloodwork. We can come back in a year.

Dr. P was fun. While I don't feel we have a ton of issues I guess if you start looking at the allergy stuff it adds up. She ordered lots of bloodwork. So much bloodwork that the lab tech couldn't do it all at once. We will have Dr. K's done at home.

We rode the train around the park between appts. Despite the pics Asa really like it!

Asa took a nap before we saw Dr. P. This is when Gracie lost her iPod! There is tons of funny conversations to go with that story! She told Barry, "Daddy, that happened in the past, this is now. If something happens a few minutes ago, it is the past. I guess I've just been to school longer than you"!!! Whew girl!! Don't worry she is still alive but only because Barry is busy looking for the extra set of van keys that he lost!

We will get up super early in the morning and head home! Please pray for safe and uneventful travel! Ok, time to pack!

Houston Day 2

2011-03-21T19:16:00.002-05:00

At 5:50am Barry woke me up and asked me what time I was getting up. I answered 6am. Then Asa started crying so we began the day early!!

Our GI appt was at 9:30. We took the hotel shuttle at 8:30. We got to the clinic early but I'd rather be early than late any day! Unfortunately the doc was running late!! At 10:30 he had still not come into the room. By the time the action started up Asa was back in the stroller. They did the whole exam with him in the stroller and he didn't shed a tear!!!! Dr. Rhoads even sat up on the exam table and Asa just stared at him! Asa didn't know what to think about that!!

He really didn't have much new info to offer. He talked about adding more Reglan. We may try that. And that's about it. I'm not sure how I feel about that. I'm not sure what I was expecting.

When we left the clinic I called for the shuttle. It was gonna be 20 minutes so we (I) decided we could walk back in that time. It was a nice day and we could see the city if we walked. What I didn't realize is that I underestimated the distance to the hotel!!! It was 2 miles!!! We walked down the side walk of a busy city street, in the wind for 2 miles and Asa didn't get sick at all! He loved it! We got back to the hotel and wanted to rest a little while but he kept crying and signing "go"! So we changed into shorts and headed back out to the zoo. This time we drove! We tried to find a McD's or CFA for a hour but came up empty so when we got to the zoo at 2, we were starving!!! And yes, we paid $30 for 3 burgers and fries! Crazy but we were desperate!! Since it is the only food we've bought all day, I guess it averages out!

The zoo was great! It must be frog mating season and Gracie enjoyed the snake house way too much!!! She was so excited about all the animals and just bounced from place to place! She'd say "come on Asa, let's go look over here" just like he could really follow her around. She left her ipod in the van so I had to use my phone to take her pics. Now I've got tons of blurry animal pics I need to send to her! I gave the mating frogs their privacy though!

Asa did so great at the zoo. Again, there was lots of noise and the wind but Asa never fussed. Not even a whimper and he didn't have a paci the whole time!! Before we left Barry and Gracie got an ice cream cone and Asa and I split a snow cone. It must have given Asa a brain freeze because he squished up his eyes and put his fist to his forehead. When I asked if it hurt his head, he'd grunt and put his fist back to his face! It was so funny! I tried to video but it isn't good.

I was so impressed that Asa handled all this stimulation so well. I even noticed and was thankful that he was laughing in the elevators when those used to make him so sick! But, as we left the zoo, for no reason at all, he started with an episode! UGH! I drained him as we drove back to the hotel.

Tomorrow we see Dr. K at 9am and Dr. P at 1:30. I had hoped to buy tickets for the train that goes around the park so we could ride between visits but you can't buy them for the day ahead. And the ticket stand is on the opposite side of the park from the hospital. Sooooo, do you think I can convince the family to walk across the park, buy train tickets and ride back to the hospital?! After today, I doubt it!

I'll spare you the pics of the zoo. Trust me a camera phone doesn't capture the magic of animals sleeping at the zoo!

Houston Day 1

2011-03-20T19:07:00.003-05:00

We headed out for Houston at 4am this morning! This is the first trip we've planned to drive all the way on one day! 11 hours, that's how long our drive was supposed to be and Barry was worried that if things didn't go smoothly we'd end up getting to Houston at midnight!

The plan was for Gracie to sleep in Asa's room with him last night and then we'd just stick them both in the van, still half asleep and head out. I got up at 3am and by 3:15 Gracie popped out of Asa's room and said "Me and Asa are ready to go!". WHAT?! She was up and ready to go but Asa did stay asleep until the last minute. Neither went back to sleep right away in the van though.

Gracie finally settled in for a nap. She looks pretty cozy if you ask me! Asa had taken a nap earlier to I was happy they both had a little catch up sleep.

Asa had diarrhea for the first part of the trip. We had to stop and change his diaper 4 or 5 times! At the last diaper stop he got freaked out by all the big trucks going by and he started getting sick. Instead of him puking all over the carseat I hooked up a drain bag. Thankfully this kept the puke from coming and it also zonked him out! This is after he woke up and was playing with the extension tube. We'd given him a sucker to try to keep him happy. It didn't keep him from getting sick but he would not let go of it! When he woke up he would put the sucker in his mouth and then the tube! It was so funny!

As soon as we got settled into the hotel Gracie turned on the TV and Asa snatched up the remote!
We ordered pizza delivered to the room (something that never happens in the country!) and watched The Blind Side on TV. While we ate Barry picked up his Dr. Pepper bottle and Asa signed "more" and pointed to the Dr. Pepper! Barry tried to give Asa his juice but signed "more" and pointed to Barry's bottle! Yep, he got a little watered down Dr. Pepper in his cup!

In the morning we will see Dr. Rhoads a GI that Dr. Koenig recommended. We'll have tomorrow afternoon free since another doc had to cancel on us. We are thinking a trip to the zoo may be in order. Tuesday will be busy with a morning visit to Dr. K, the mito doc and then immunology in the afternoon. I think we are all ready to crash tonight!

Is it Spring Break yet?!

2011-03-18T21:38:00.002-05:00

The weather has been wonderful here this week. Lots of 70 degree weather and sunshine! The trees are blooming and buttercups are everywhere! This kind of weather could really spoil a girl!! Asa loves it too! He doesn't want to come in the house when we come in from school. He wants to stay outside and play! Who can blame him!

One day we got out of the van and I started helping him walk. For some reason he got freaked out and started getting sick. He wanted to be held but not be held. He wanted to walk but couldn't handle walking. He was just a fussing, puking mess! We tried his Power Wheel car but that didn't work either. I tried to swing him but that didn't work either. I finally put him in the jogging stroller that was on the porch. He settled right in and pointed in the direction he wanted to go! So funny, he knew he didn't want to go inside, he didn't want to just sit, he was too tired and sick to play. So he rode, I pushed, he puked some and then he felt better! Now he was ready to play. He played in the swing, he slid down the slide and he played in the clubhouse up high! I have pics but when I rechecked them, there was a little puke on his shirt so I'll spare you from that! You're welcome!

Today was another exciting day and our village grew by 300+ people! As an awareness and fundraising project I asked our local elementary school to sponsor a "Dress Down for Mito" day. If the kids donated $1 to the UMDF then they could dress out of their uniform and wear jeans! I have to say that I love our school! All my kids have gone there and you won't find better teachers who really love their kids!! So with some apprehension I asked our principal if we could have this dress down day. I was relived when she whole heartily agreed! So we set the date for today, the Friday before spring break. The school also arranged a concert with an anti-bullying theme. So Barry, Asa and I were at the school bright and early. A couple of the teachers introduced Asa to their class and then we were introduced before the concert. The concert was great but it was loud and Asa didn't get into that! He handled way more noise than I thought he would though! But anyway, I'm getting distracted! By the end of the concert they had the total for the "Dress Down" day.....$360!!!! Can you believe that!! That's more money than students! So cool! And I had the opportunity to talk to several groups of kids as they left the assembly. One little boy asked how mito affected Asa and when I told him that Asa's muscles were tired and weak and he couldn't walk or talk, the little boy said "Wow, if I'd known that I would have given you my whole check, like $114 dollars!". How sweet is that! I feel so blessed to be part of such a wonderful community. We are a rural area and a small school but with they sure do have the biggest hearts!

Before the assembly started Asa had the best time! I helped him walk all over the gym. There are number spots on the floor so the kids know where to line up and Asa walked over and walked all the way down the number line, even under the roped off section for the concert sales!! It was easy for him to go under the rope, not so easy for me! He kept going to the padded part of the wall under the basketball goal. Finally I stood him against it and he just stood there laughing and playing and slapping his hands! I did get a great pic of him! I hate the full length one is so blurry! After all this excitement it was a tough day of school for him! I think he took a nap, they drained his belly and was still pretty crabby! Bless Asa's teachers hearts!! Bless ALL the teachers hearts! That's OK, spring break starts now! :)

Distractions

2011-03-17T21:57:00.002-05:00

I'm only blogging as a way to procastinate getting ready for our Houston trip in 2 days!!! How's that for motivation! I've got medical records, test results, insurance forms, directions and ALL my questions to gather for our trip. I know where most of the needed info is but I need to get it all together. And don't even mention the packing of clothes, foods, meds and stuff! Yep, I better get busy.....tomorrow!

This has been a busy week just as I predicted! Asa got a haircut today. This is usually a very dramatic even!! I was ready for much of the same today. Instead it went really well. Of course, he did cry and squirm and want away but not more than any other kid I don't think. Oh, and he kept pushing the super sweet and speedy stylest. It still took the stylest, me and the other stylest to get the job done. Again, it was not near as bad as usual! Maybe the Zoloft is helping really him!

When I picked Asa up from school on Wednesday, his PT stopped and chatted. We've been going back and forth about getting a manual wheelchair vs a walker for Asa. On one hand he CAN walk with support but he gets so tired and he only likes the support of feeling your hands on him! I'm not sure a walker would help out too much. It would still be a ton of work for him and that takes some of the fun out of it. I think it'd be like us sprinting everywhere we go instead of just walking. That sure doesn't sound fun to me!

A wheelchair on the other hand would let Asa have some freedom to move and explore without having to do so much work. He would be comfy and supported and hopefully enjoy playing on his own. Maybe that would end some of his frustrations. But.....having a chair doesn't mean we'd give up on him walking!!! He'll still have PT and I'll still hunch over and walk him as much as I can but when I give out, he'll have a way to go on his own. Sooooo, yep, we are starting the process of getting Asa a wheelchair. It's a mixed bag of emotions for sure.

We got home from school yesterday and the weather was so wonderful. I knew Asa would want to be outside. We got out of the van and he took off walking with my help. It was only a second later and something freaked him out! I have no idea what happened but he got soooo sick. He was gagging, drooling, spitting up yucky stuff. He wanted up and then down but couldn't stand or walk. Anna got his Power Wheel but he didn't want that either. I tried swinging him and playing on the playground but he was still sick and unconsolable. He wouldn't let me come in or put him down. Finally I put him in the jogging stroller and he settled right in and pointed to the front yard!! He continued to sit and watch from the stroller. He was still gagging and spitting up but he was happy at least. I still don't know what was happening but I was just glad to be able to settle him after 30 minutes!!

I'm sure I had more to say but now my eyes are closing in a hint to go to bed!!! I'm sure I'll need a good distraction tomorrow though!

Our Village

2011-03-12T20:04:00.006-06:00

There is very little that I'd agree with Hillary Clinton on, in fact, this statement may be the only thing, but I could not agree more with her statement that it takes a village to raise kids!! And having a special needs kids REALLY takes a village! And my village was busy this weekend!!

Barry, Anna and I went out of town this weekend with our church youth group. Every year there is a big weekend of worship and learning and serving our God. I went as a teen but it is different going as an adult! I know many of the kids do appreciate the message but sometimes it seems like such a slow process! If they'd just listen to us wise adults then they could save themselves a lot of trouble!

This year it wouldn't have been possible for all three of us to go if our family didn't have an awesome village surrounding us!! We really needed Barry to go as a van driver and Barry wouldn't want to go without me. Anna however didn't want either of us to go.....but really she didn't care, she just couldn't admit it! LOL! But if all of us left, then who would take care of the 3 little ones? Who would run Cade to his first baseball practices of the season? Who would help with Gracie and her first softball practice of the year? That's where our village comes in!!

On active duty this weekend was my mom and dad. Moma didn't work on Friday so she could be here and keep Asa on since we left before noon. She took my directions on Asa's feeding and med schedule. She got Cade and Gracie off the bus and did all the cooking, cleaning and washing for the weekend. I know most all grandmothers babysit for their grand kids but I wouldn't normally ask Moma to keep the 3 smaller ones at one time! And let's face it, Asa is more difficult than most kids! Just keeping him can be a chore not to mention Gracie and Cade with their squabbles, feedings, messes and schedules! What a blessing to have my parents right next door!! Thank you Moma and Daddy for keeping them all this weekend!

And then there was Cade's first baseball practices of the season. He had practice on Friday and Saturday. Since Asa is usually less than fond of the ball field, it can complicate things like ball practices and games! I am hopeful that Asa will have more fun at the ball field this year since his sensory issues have mellowed out some! What I trade off in sensory stuff may be made up for in Asa's new "go" attitude! Still, I didn't want to have to test my theory with my mom! That's when my village expanded to Robin!! She has twin boys the same age as Cade and the boys have been in school and on ball teams together since Kindergarten! Her hubby happens to be the boys ball coach but this doesn't mean it was easy to add Cade to her schedule. Her dear hubby was working so not only was she playing single mom to her boys and little girl Jude, she gladly added Cade to her schedule for both practices! And not that a 10 year old boy is all that much trouble but some days just another person can throw the balance off! I hope that didn't happen this weekend! :)

I'll tell you another thing about Robin..... Her boys have a birthday right before Cade. When Asa was 4 months old and in the hospital for 7 days, it was the week before Cade's 7th birthday! We got home on a Friday evening and had a party the next day. The way I recall things, Robin had a skating party scheduled and let us bum onto her boy's party! They shared school friends and we both invited some family and had separate cakes but without her help who knows what kind of birthday Cade would have had! I know she'll love me tooting her horn about all of this but sometimes horns need to be tooted!!! Thank you Robin for being such a kind and caring friend!

And then that just left Gracie! She really wasn't all that thrilled that I signed her up for softball anyway, but then we were going to miss her first practice too. I was afraid she'd be mad and really not want to play! Shockingly, Gracie can be a little rotten and dramatic (must get that from her daddy)! Our neighbor and friend, Christi, was going to take her to practice but Gracie decided that she wanted Dee Dee to take her....insert the rotten here! Soooo, my mom took Asa and Gracie to practice! When Asa wasn't having such a great time and my mom took him home, Christi brought Gracie home! Again, hopefully my girl wasn't any trouble but I just hate to intrude on other folks schedules. Thank you Christi for taking care of Gracie at practice and bringing her home! Both the kids have really awesome families on their teams!!

We are so blessed to have great friends and family! And these are only the handful of villagers who help out in our village! Our village is full of people who will pick kids up, drop kids off, take charge of things, babysit anytime, etc! This just happened to be a busy, crazy weekend! But the point is that we are surrounded by people who make these times less crazy and busy. I honestly had no worries that the kids would be happy and taken care of while we were gone! And if you think that I'm a bit dramatic to make such a big deal out of a 2 day trip then you don't realize that I'm a control freak who wants to know the who, what, how and when of every day! I like to have a well defined plan, not just run off for a trip while my kids are scattered and shuttled around. But with such a great village I know that I'm covered, the kids are great and everyone can have fun!

So thank you to our village, those on duty this weekend, those on duty for our Houston trip in 2 weeks and those who are standing ready! It takes a village and ours is top of the line!!!

A beautiful sight!

2011-03-09T20:50:00.003-06:00

From the time Asa was a little baby, I've had the same prayer for him as I've rocked him to sleep at night. I've prayed every night that when we get up in the morning, things will be back to normal and this last 3 years will have been a bad dream. This prayer seemed possible when Asa was just a few weeks or months old. You'd think by this point I'd realize that this "bad dream" scenario isn't going to happen! Even as I've let a lot of dreams and hopes go, I've still held onto a few dreams that if I was honest, I really didn't think would happen. Things like Asa being a walker or hearing him say "Moma". And it isn't that I'm depressed at the thought of him not walking or talking because of all the issues that he could have, these are very mild. Sure they are frustrating, tiring and disappointing but not tragic in any way!

But, still, as crazy as it seems, when I lay down with Asa and my mind wanders. I find myself praying that when I get up in the morning this whole journey will be a bad dream and I'll wake up to a happy, laughing boy sitting up in bed, calling for me to get him out. I've never given up on that dream of normalcy even as we have worked so hard for each and every milestone Asa has met. A few times when Asa was still in his crib, I'd hear him banging and go into his room expecting to see him sitting up and rocking the crib. You know how babies do when they hold onto the crib rail and shake the crib so that is crashes and bangs. But I'd go into his room and he was only kicking the crib rail. Big kicks but still, not sitting and shaking. Not strong and normal.

Now that Asa is in his big bed he bangs and kicks the wall. That's how he wakes up in the morning! And this morning was no different. He was kicking and banging the wall but happy. I usually let him kick and play until he cries and is ready to get up. This morning it was after 9:00 though so I went to his room. When I opened his door I saw him sitting up on the bed and he'd gotten a toy bucket from the shelf at the end of his bed and was playing with toys!! I stood there in shock for a second! Asa has never sat up on his own unless during therapy or with us helping him and prompting him. Yet, there he was sitting up in bed!! And he had wrestled a box of toys from the shelf and was just playing! It was really a dream come true!

Who knows what tomorrow will hold! Asa may wake up and decide to get out of bed on his own and come scooting into the living room! Wouldn't that be amazing! He got out of the recliner on his own yesterday so there is really no telling! Such an awesome little guy!!!

God has been so good to us and given us health and happiness. And now He is blessing us with milestones too! It is almost too much for me to think about. God's timing is perfect!

Oh and I've got to tell you this funny! There is an Energy For Life Walkathon in Nashville on April 2nd. Since my family and friends are sick of me hitting them up for donations, I decided to hit the kids elementary school up! I asked if we could have a "Dress Down for Mito" Friday. The kids donate $1 to Team Asa and the UMDF and they can wear jeans instead of the dress code. The principal agreed (eagerly, I might add! I love our school!) and I sent a letter of introduction to each teacher. Tomorrow I'll pass out reminders for the kids. Anyway, Cade said his teacher talked about mito and the big "dress down" today. When I asked exactly what was said he was telling me and said she didn't exactly say mitochondrial disease correctly but "she did pretty good for a beginner"!!! Hahahahaha!!! He was so serious too! And yes, my 10 and 7 year old can pronounce mitochondrial disease better than even many doctors!!! The doctors do pretty good though......for beginners!

Randomness

2011-03-07T20:09:00.002-06:00

We are getting ready for the Mito-What? 5K! It turns out that running outside is much harder than running on the treadmill! And we live near hills! Who knew!! Anna and I tried to do 3.1 miles today but we got a later start and had to get back before Cade and Gracie got off the bus. We did 2.94 miles in......43 minutes! We are slow! I guess we still have 2 weeks to get faster. If I'm that slow I'm just doing the 1 mile! At last check there was 270 people registered but there is still room for you if you want to come!! Or sign up as a runner and just be a virtual runner. The money goes to the UMDF no matter if you show up or not!!!

And I got all the sponsors I needed to be a Mito Hero!! I'm working on a little something for my sweet sponsors but well, I'm slow and easily distracted! Still, my goal is to be finished before the race! In the meantime, thank you all so much!

This time in 2 weeks, we'll be Houston! I finally got the EMU recording and report from Asa's EEG that was done in July 2010. I wanted Dr. K to see a whole "episode" from start to finish. You can clearly see that Asa is upset and it is noted in the report but I wish it had sound and a better view of Asa's face. Oh, well.

We also got a letter in the mail yesterday saying that one of the Drs. we wanted to see is going to be out of town. This was the neuro who specializes in autism. I'm really not sure what she was supposed help us do but now we won't see her. I did get some names of psychologist here who may be helpful. I'm just really confused if we need to go this route. Maybe he is just a high maintance kid and spoiled rotten. Or maybe he does have some behavior and mental issues that need to be addressed. I flip from one theory to the other hourly!

Speaking of his behavior.....this morning I spent the day picking him up, putting him down, letting him walk around holding my hands, putting him in chairs, taking him out of chairs, round and round, over and over! I finally gave up and just stopped. Can you guess what happened next?! Yep, screaming and screaming! I can tell he is frustrated that he can't get around on his own. I'm sure that's not all the problem but it is a big part. I finally put the seat back in his gait trainer and he was able to walk around but then sit down when he got tired. This was better. I also brought in a little car and he rode around on it for a minute. The whole time I was cooking supper though, he scooted around me trying his best to sit on my feet! It is soooo good to be soooo loved!

Oh and also while I was cooking supper and Asa was trying to sit on my feet and climb my legs, the insurance company called. They wanted to remind me that they cover well child visits and their records indicated that Asa was past due for a check up! HAHAHAHA! The guy was nice and I let him do his speech, then I assured him Asa was up to date on his check ups and then some! He told me I could go to their website if I needed help with any other issues we were having! Oh, if only it was that simple!!! He did remind me that I need to follow up with our case worker to be sure things are in place for the Houston trip.

Just a "normal" Saturday

2011-03-05T20:27:00.003-06:00

Today we decided to do what tons of other families do on Saturdays. We got up and got dressed and headed to town for some shopping and eating. Cade had birthday money to spend and there was errands we needed to take care of. So off we went.

Asa was screaming and gagging when we left but I hoped that he just needed to get out of the house. Most of the time he can tell when we are getting ready to leave and he starts screaming like he is gonna get left. Unfortunately, all the crying made him sick an he ended up puking all over himself and the carseat before we even got to our first stop! Barry was ready to just turn around and come home but I said I had extra clothes so they could go spend Cade's gift card while I changed Asa. The only problem was that I used the spare pants another time and all I had was a spare shirt. So they all got back in the car, we went across the street and I went in alone to buy Asa pants, which by the way were all replaced with shorts and t-shirts so I had to dig through the clearance! Anyway, I got back to the van and Barry said he'd pooped and gotten it on his socks! Thankfully I had spare socks! So now Asa was decked out in his spare sock (too little), spare shirt (slightly stained) and new pants (too big but if I'm gonna pay $2.30 for pants they are gonna last next year too!). Off we go for Cade's shopping spree part 2!

We headed to Best Buy where I told Barry and the other kids to get lost so I could try the iPad and the Proloquo2go AAC app with Asa! Seriously the highlight of my day....or so I thought at the time! This is a communication app and Best Buy has a trial version on the iPad you can play with at the store. So I tried it out with Asa and he liked to hit the little pencil in the bottom corner that sent it into the "edit" mode, over and over and over! Picture me slapping my forehead! At some point him to push "please" and after he heard the word, he signed it! So cute!!! A salesperson came up and started talking to us. I helped Asa say "hi" and "good morning". The salesman left! hehehe! Overall Asa just liked tapping away. He would wave when I helped him tap "bye bye" so he really gets it but he'd need lots of help with it! I'm keeping my eyes out for a great deal on an iPad. And I mean a reeeaaally good deal! Like a marked down, refurbished one! I'm in no hurry though, maybe by the time iPad3 comes out I'll find my deal!

After Best Buy we went out for pizza. Barry sat beside the ice machine. Does that need further explanation?! I'm kidding, he picked the best available table and the ice machine wasn't too back but Asa would just and cry out when someone got ice. It didn't matter much though because there was a birthday party of 10 year old girls. Does that need further explanation?! Let's just Asa's squeal sounded a lot like those girls squeals! As we were leaving Barry put Asa in one of those coin operated cars. Asa sat and spun the steering wheel. For some crazy reason I decided to put in the coins and make it go. Maybe I was thinking we had met our mess quota for the day so he wouldn't get sick, I don't know but I put the money in! And Asa loved it!!! He was laughing and happy. It was so funny!! I'm trying to load the video now but don't hold your breath!

It is our pizza adventure that turned out to be the highlight of my day! When we pulled in I took a handicap place. Asa has a handicap placard. It was cool, windy, raining and since he was already super sensitive we parked and Barry ran in with Asa while the rest of us unloaded. When we pulled in there was a GMC Yukon parked in the lined space beside the handicap parking space. Now since we don't use a lift this was not a huge deal for us. Rude, sure but not a huge deal. But when the same truck was still sitting there after we came out of the pizza place, an hour later, and he was still there I was grumbling and mad. There is a movie theater nearby and we thought he'd parked and walked to the movies. That mad me ill. As I walked around my van I noticed he had a personalized licence plate that said "4 God"! Really!!! Now I was very mad! Sooooo, I got a UMDF flyer that I keep in the van, wrote a nice little note on it pointing out his illegal parking, placed the note in a empty bag that the Farrell bags come in and left it all under his wiper!!! I'm usually the last person to stir up trouble but I was mad he had parked there for so long and then more angry when I saw the plate! Since the movie was letting out, we parked in another spot to see if the driver was coming out of the theater. By this time our kids were thinking Barry and I were crazy and Asa had eaten 2 Dum Dum suckers but Barry and I were waiting! Surprise to us when a man came out of the tanning salon in front of his truck, took the note off his truck, went into the nail salon next door, came out, went back to his truck and then back into the nail salon. I'm assuming it was the owner of the nail salon and tanning bed! Can you even imagine pulling up and parking in a space reserved for the handicap, smack dab in front of your business!!! Stupid!! We drove back through the parking lot on our way home and the truck was moved down a space or two. And I get that Asa's issues are pretty mild so I wasn't angry for myself for my friends who have to use a lift van or get a wheel chair right up to the vehicle. It is tough for me to get Asa out of our van and he is only 32 lbs and 3 years old. I do use those handicap spaces to make it easier for me so I don't have to carry him. I'm gonna be carrying him for a loooong time and my back already hurts! I can't imagine how some of my friends do it with bigger and older kids! So I felt like I took some power back by educating this dumbo on real disabilities and proper parking etiquette!

And it ended on a very high note! Cade had more bday money and wanted a BB gun. Gracie and Cade have both asked for one for a while but they haven't saved enough money. Today Cade got one and Gracie was very sad that she didn't have any money to get one. Her bday isn't until April so she still had quite a wait! Cade saw her so sad and told Barry that he wanted to buy one for her!!! He and Barry slipped away and bought it. When they came back Gracie asked why they had 2 guns. Cade told it was hers and she started hopping up and down and clapping. She even gave him a hug!!!! She is NOT a hugger but she was for him!! The second they got home they tried them out. Barry showed them what to do and he aimed and hit a flag pole we have in the yard. Cade took his gun aimed and hit the pole on his second shot. Gracie hit it my her 3rd or 4th! They spent the next 30 minutes outside hitting target cans and only came in because it was getting dark and we made them!!!

Even with all Asa's puke, poop and screaming, we had a great family day. It was just a "normal" family day for us!

Another first for Asa.....

2011-03-04T06:30:00.002-06:00

Another first! Today I had some errands to run after I picked Asa up from school. I realized that I forgot to take an extra can of Pedisure with us! Now, of course I could have bought a 6 pack of Pedisure for $10 but we have cases and cases at home and I kept thinking of all the other stuff I could do with $10. So I made a decision.....I would give Asa real food instead of a Pedisure cup!

I know that he eats lots of real foods but he has never had to rely on real food. I'm happy if he tastes and plays with real food. But I don't think he takes in enough calories from just food. But today we were gonna see. After school we went by McDonald's and I ordered food just for Asa, well I got a coffee for myself! I ordered Asa a yogurt and a cheeseburger. Asa gobbled the yogurt up and ate the cheese and bun from the burger. He can't chew too well so I only gave him a taste of the burger (I hear you cheering that I didn't give him the meat, Christine!). I thought it was pretty funny that he is nearly 3 1/2 and we've never ordered food for him at a restaurant!! After the grocery store he had an applesauce pouch so I don't think I had to worry about the calories! He never did eat his 3rd cup of Pedisure today. When we got home he got sick so he went to bed at 7pm after I tubed his meds. I just hope he doesn't wake up at 5am tomorrow!!

I've had to keep a feeding journal this week for the GI at Vandy. The first day I was tickled that he ate so much real food. It was a Monday and a day we don't have any appts or plans. On Tuesday he did ok but he couldn't eat in the morning. By Wednesday he was so gaggy in the morning that he couldn't even eat his breakfast Pedisure until after 10am. He ususally has this at 8am. He continued this gagging the next 2 days too. I wonder if he is having sinus drainage issues and is choked up in the morning. He just gags and gags and covers his mouth. I hate to see him stuggle with whatever it is but in the past he hasn't had the ability to gag without puking so this is progress believe it or not.

On a terriblely sad note, the mito community lost another little fighter yesterday. I've mentioned Cooper Knight on here before, asking prayer for him when he had a transplant last year. Sadly, the transplant didn't go as well as everyone hoped but Cooper held his own and he was back home in time for the holidays. In January, he went on his Make a Wish trip to Disney with his family. In February, he had another surgery and just didn't bounce back at all. He got very, very sick but would seem to be ralling back before he was knocked down again. Each time he kept fighting and his family kept fighting. Last week his family and doctors decided that Cooper's little body was too weak to keep recovering and it would play out long before his strong will and fight. Last week Cooper came home from the hospital to be with his family for as long as he could. According to his mom's blog and FB, they enjoyed every second they had together. He even managed a stroll around the neighborhood in his Power Wheels and have wars with his brothers using marshmellow guns! And even though his body couldn't fight anymore, he continued to fight. Sadly, he could no longer fight and last night he passed on to the loving arms of Jesus.

I know it is awful to think of kids dying and many of you may have no idea who Cooper is (or any of the other kids I've mentioned) but they have an amazing story to tell. Even as little kids they have more fight and love and life in them than many grown people I know. How can such little people teach us adults so much?! And the parents, siblings, cousins, grandparents and friends that love these little mito warriors are warriors themselves. Where many of us would curl up into a ball, these families share the struggles and joys of their little ones. They have faith when I'm not sure I could. They remain hopeful when everyone else has given up hope. These are the type of people I've become "friends" with over the last 3 years. I'm so proud to have gotten to know all these families and my heart breaks when I hear of another loss in our "community". Heaven has too many of our mito kids!

I guess that's why I share our story and their stories. To raise awareness of a fairly unknown disease that is taking away amazing kids. I wish we could cure mito but that seems unlikely to happen tomorrow. What will happen tomorrow though, is that mito will be attacking kids, harming them...many of them permently...and yet most people have never heard of mito. It is a silent killer! If it is going to steal away these brave souls then it should have a name and everyone, EVERYONE, should hate it! Not just a small community! I could go on and tell you all the reasons mito could affect your family. Things like diabetes, Alzheimers, Parkinsons and some cancers. And all these and more are true but tonight the reason to hate mito is for Cooper Knight......his mom Sarah, dad Kevin, big sister Caroline and big brothers Oliver and Adam! That's why I hate mito tonight!

Cooper's service is Tuesday at 10am. His favorite color is orange. I'll be wearing orange and thinking of Cooper even from miles, hours and states away!

Roller coaster

2011-03-01T21:10:00.005-06:00

You know you need to blog more often when you have go back and look at the last thing you talked about on the blog! It just seems like we are pretty boring doing the same things day in and day out. If "boring" makes you think "easy", you'd be wrong but we are thankful for "boring" anyway.

I realize that last week I posted that wonderful video of Asa walking in the gait trainer. Well, he hasn't done it since! He goes crazy when I put him in it now. What's that about?! Today when I dropped him off at school I asked that we start looking at getting a manual wheelchair for Asa. I'd love for him to walk as his main form of mobility but that just isn't happening fast, at least not as fast as either of us needs him too! He wants to be independent but bottom scooting isn't the way to go. And using the gait trainer takes ALL of his skills and is hard, like work not fun. I don't blame him for not wanting to use it all the time. Imagine walking with 10 lbs weights around your ankles while balancing a gallon of water on your head. It would be hard, even impossible, so you'd cut out alot of your walking!

At least that is one theory of why Asa is a screamer! He has the desire to go, do and be involved but not the skills he needs. And since he can't tell us what it is he is wanting we are left to guess. And if we let him cry then he pukes but if we give into him we are creating a bigger monster. Or maybe he is so exhausted from just being that he can't control his emotions. My mom says he just knows what he wants and knows how to get it. So until we give him the way to get it on his own or the words to use to tell us, he'll just scream and we'll just jump and guess. Good times!! We have made some small changes. We all use the same "no, screaming" message as soon as he starts screaming. I've been trying to get him to point or sign. This still needs a ton of work. Mostly I feel like we are failing. Yesterday he wanted me to walk him around. This is after we'd been doing that all morning. Picture me hunched over with him holding my hands and leading me around. So, to give my back a break I tried to set him up in the gait trainer. He completely lost it! It ended up with him nearly puking and then zonking out for his regrouping nap. So I don't know.

Boy that sounds really pathetic doesn't it! And yes, it is nerve racking to deal with this new stuff, BBUUUTT Asa is doing so well in so many other areas. He is eating up a storm! Did I tell you we have him on a diet?! Not really but since he is eating so much real food we are only using 3 cans of Pedisure instead of 4. And even though he isn't walking on his own, he has made great strides while you hold his hands. And yesterday moring he scooted into the kitchen and got into every low cabinet pulling out pot, pans, storage container, storage bags and anything else he could find. He even got into the dishwasher and pulled out the clean silverware! It was the most wonderful mess ever!

And we had some fun art projects once the big kids got in from school. Asa liked getting his hands painted and would lean in to smell Cade's hand. He is naked because he had paint everywhere! I wish I'd gotten a pic of that. I did get video. And yes, he is painting with a spoon and I do realize how this could confuse him since we try to get him to put the spoon in his mouth and then tell him "no" when it is covered in paint. He really never tried to put it in his mouth and only had it a second. He liked using his fingers better!!

Ok, I have 3 more pics but I tried to load them 3 times last night and twice this morning! Since I'm feeling like I want to throw the computer out the window, I better step away! Maybe I'll try them later.

A little of our weekend....

2011-02-22T19:19:00.004-06:00

We had quite a busy weekend! On Saturday we went to our church parking lot to ride bikes, scooters and so Asa could walk in the gait trainer. I wasn't sure how Asa would do in the wide open spaces but he did great!!!! He has only ever taken a dozen or so steps at one time. I have video of 2:22 minutes of him walking and he probably did 3 minutes in all. Too bad that right after I turned the camera off and helped get him back on the pavement, Cade ran by him and scared him. Cade wasn't trying to scare him but Asa completely lost it. He got scared, fell down, cried, clung to me, thrashed around, gagged, screamed and then dozed off. When he woke up he was perky and happy again. I really wish we knew what these episodes are and if we could help him with them. Imagine how far he would have gone if he wasn't so jumpy and scared. Anyway, here is the walking video! I'm so amazed that he is walking and moving but also that he is so straight and tall and you can't tell much but he is grunting and humming and vocalizing! He was soooo happy!

Saturday night we went to our local volunteer fire dept for the annual chili supper and auction. I remember going to this when I was a kid. Yummy food, lots of neighbors and friends and lots of good junk (or treasures if you look!). At the end of the night they opened the bay doors and lots of the kids were hanging out on the fire truck. Makes me wonder how many of these kids will be volunteering on this truck when they are grown up! It was also funny to see all the adults pull out cell phones to get this shot!

On Sunday afternoon we headed behind my parents place to a dry creek the kids like to play in. We had tried the gait trainer earlier and Asa fell and then we started the whole pukey stuff over again! Good times! Anyway by the afternoon he was playful again. We took the push chair my dad made and Asa was trying to push off road. He had fun playing with some sticks with Cade. And it was very windy so Gracie and my dad were flying kites. Asa had a kite that was already broken and he had the best time flinging it around and watching it flap. And yes, the wind is a pretty big stressor for him but lately he has handled it great. We started playing a game where I tell him the wind is going to tickle his hair and he better hold it down. Sometimes he rubs his hair and sometimes he laughs and is fine without rubbing his head.

And since Monday was a holiday the kids were all at home for the day. We had a great, relaxed morning. I did my treadmill training for the Mito-What 5K. Then I threw the baseball and softball with Cade and Gracie. I got a double work out from them! As soon as I had the baseball back to Cade, Gracie had the softball coming my way. I may or may not have thrown a few over their heads just so they'd have to run after them and I could have a breather!

After ball, we had lunch and I laid down with Asa for his nap. Just as he was dozing off I hear the front and back doors opening and closing, opening and closing, banging around. Of course Asa heard this too and would open his eyes. By the time Asa finally dozed off I was ready to have some kid's behinds! Why would they be so loud when they knew Asa was going to sleep?! It didn't take long to find out why they were so loud!

Cade flipped his 4 wheeler over and they were trying to get it out before I got up! Cade was fine and we got the 4 wheeler out and it was fine too! I'm not sure what happened but we had the whole safety talk again and the 4 wheeler is parked for a week.

In all that excitement I completely forgot about Cade's buddy's birthday party! My heart had just started beating at a normal pace when I got a message about the party. I hated I forgot because I happen to like the grown ups involved and Cade was mad because it was a cool laser tag party! Oh, well, I'm just glad my heart was still beating!

After such a busy weekend I was kinda glad we were back on regular schedule today! Until Cade and Gracie missed the bus and I had to shift into high gear to get them to school on time! We made it though and the rest of the day was as expected....well, with only the regular craziness at least!

A little YouTube

2011-02-18T13:53:00.002-06:00

Here's a couple of videos that I've posted to YouTube. There is another one I'm working on but it is too long!!! Oh and I aplogize upfront for my loud, red neck voice!! I have a hard time remembering the mic is so close to me! In fact you should just turn your volume OFF from the get go! hehehehe

Asa cruising

Brother fun

GI appt

2011-02-17T23:01:00.002-06:00

Asa had a GI appt yesterday. Once a month a GI or GI nurse practitioner comes from Vandy to a clinic in our local hospital. Saves me a 5 hour round trip drive!!! Our first GI left Vandy and we switched to a female Dr. that I like but I love the NP that comes here! She is soooo down to earth and easy to talk with. She has followed up with questions or issues that we've had to leave hanging at the appt.

I also love our local clinic because Asa started getting weighted there when he was discharged from Vandy with the NG tube at 4 months old. We did weekly weight checks for ever! The sweet nurse even commented yesterday that she remembers the day she got the call from Vandy saying we were coming in to get a baseline weight as we left Vandy. So each time we go it is a little like visiting friends!

And after all those weekly weight checks and weight worries, I'm happy to report that Asa is sitting happily on the growth chart! He is at 40%! We tried so long just to get him to the 3% mark!!! Unfortunately he isn't growing longer and that throws his BMI off! He is 32 lbs and 34 1/2" long. For the last month I've tried to keep him down to 3 cups of pedisure a day plus whatever food he eats during the day, which isn't a ton but some. From now on I'm gonna try even harder! No wonder my back and left shoulder kill me! I've finally got a chunky monkey! Oh, and since he is over 30lbs he had to be weighted on the stand up scale. Except he doesn't stand up! It was so cute to see him sitting down on the scale. I should have taken a picture!

Asa was pretty great the whole appt, especially considering I didn't have a paci for him. We've been trying to keep the paci away unless he is tired, hurting or screaming! There is always one in the car seat though. Or in the seat the car seat sets in . Or in the floor beside the carseat. Or in the diaper bag. Or in my purse or even pocket!! Except yesterday!!! He was fine during the BP check, the weight check, the height check, the waiting. He was really good. Then the dr came in and turned on the sink to wash her hands!

Asa loves water! Like OCD loves water!!! He had a fit wanting in the sink. And that is partly my fault bc I've let him play in the water at appts before bc he is usually naked and getting poked and prodded! This time he was fully clothed and no sticks were coming! No matter to him!!! He set out screaming!!! Really screaming!!! And when I didn't respond he started hitting me and then hitting himself. I had 2 choices, get him naked and stick his hiney in the hand sink (which would only feed his fire!) or just deal with him. I chose the latter and we just talked over his screaming and fit! I do feel bad for the other patients though! This really seems to be a new way of life for Asa and us. I keep writing blogs about it in my head but don't put them on paper. Maybe soon though. No promises though!!!

So the GI appt was great and we go back in 4 months!!! Sure beats weekly weight checks!!

Rough week for mito kids

2011-02-16T06:41:00.004-06:00

Thanks to this big internet stuff, I've been able to "meet" many mito families and follow their triumps and struggles in the 2 years since Asa's DX. I've seen several kids struggle and fight and overcome sickness and obstacles that I can't imagine. I've witnessed several whose little bodies have fought until they can't fight anymore and they gain healing and peace in the arms of Jesus. I've learned from the strong parents that I feel a connection with even though we've never met in person.

This week has been pretty hard on several mito kids. I asked the question if this was happening more or am I just aware of it more. Obviously the answer is that I'm more aware. There is struggle and heartache all over the place and we usually just walk around with blinders on, not aware of the hurt that surrounds us. I know Asa's condition is so much more stable than lots of kids but even in our situation, I look at people as they go about their daily lives and I wonder if they realize the blessings they have! Do I realize the blessings I've been given?

First, Eithene has been in the hospital for 10 months straight except for a brief 10 days at home. She has numerous struggles and each time they thing they have a handle on things, something else is thrown off. Her family has had to make many, many decisions that are beyond difficult.

And then sweet Cooper, who I've asked prayers for before, is not doing well. He had a transplant last year and after a long, difficult recovery was doing OK and even took his Make A Wish trip in January. Sadly, he had to have another difficult surgery and mito being mito, he had a hard time afterward. His family is still praying and believing in miracles but many of his specialist believe it is time to just take him home and love on him until the infections take Cooper from his earthly home and he goes home to be with Jesus. The things this boy and his family has overcome are inspiring. I know they wouldn't want to be called that though because they are just doing what you do to keep your sweet boy alive!

And sweet little Zach! He has been a fighter too and this time got hit with a big whammy of infections and his little body needed rest and help. He is in the ICU on a vent and with a chest tube. His is doing some better this morning but is still very, very sick.

These are just a few of our mito friends. And I ask prayer for all the mito kids fighting this horrible disease. It affects each person completely differently and that is a huge part of the problem. And these kids don't fight alone. Each child I've mentioned has awesome parents and siblings. They are loved by grandparents and aunts and uncles. They have touched the lives of the therapist and doctors and nurses who work with them. None of us fight alone!

And when I ask for donations for the Mito-What 5K in Millington or the Energy for Life Walkathon in Nashvile, I do so not only for Asa but more importantly for these kids who so desperately need a treatment or cure! How many more kids will have to fight, and ultimately lose, before there is awareness and treatment?

Sunny day!

2011-02-14T21:18:00.002-06:00

We finally have some warmer sunny weather around here!! And sunny with 60 degree temps is perfect for Asa!! We spent the morning out in the flowerbeds. I spent an hour (or more!) mutilating a crazy rose bush that won't die! I found it kind of ironic to be in a battle to the death with the symbol of love on Valentine's day! And just so you don't think I'm harboring some kind resentment or anger at love and romance, this rose bush cost $1 from the dead buggy several years ago and it has just grown and taken over everything each summer! It just won't follow the rules! Nothing against true love!!

And while I battled the thorns, Asa happily played, scooted and laughed in the sunshine! He played with the leaves and dirt and sticks. He had the best time!!! At one point I was chopping at a tough root and I was grunting. When I took a breather I noticed Asa had a stick and was grunting while banging the stick on the sidewalk! Was he making fun of me?!

We only came in for lunch and a nap. After we picked Anna up from school it was back outside. Asa wanted us to hold his hands while he walked around some. Then I hung his swing up and he had a great time swinging outside! Oh, if only everyday could be sunny and 60!

And the pic above needs some explanation! Asa was playing and had his paci in his mouth. He found a clump of dirt and picked it up. I was so pround he was touching it even if he was making an awful face. As I was watching so proudly, Asa popped out his paci and stuck the dirt in his mouth!!! GROSS!!! Who'd thought he'd put dirt in his mouth when he will barely put food in his mouth without prompting! He did self feed an applesauce pouch, a few gummies, 2 cheese and cracker, a pinch of shredded cheese and fruit loops today so maybe a little dirt didn't hurt!!

Tubie pics

2011-02-09T13:29:00.007-06:00

This is Feeding Tube Awareness week and I've seen so many people do a photo journal of their feeding tube experience. We didn't take too many pics before the tube, when Asa was soooo sick, but still I think it is neat to have this sort of journal.

Asa's first feeding tube was a NG tube when he was in the NICU right after he was born. He physically couldn't suck and his blood sugar would drop without eating so they used a NG tube to feeding him while we taught him to suck. He didn't come home on the tube and we hoped this was the last we'd see of a feeding tube!

But it wasn't. Born at 8lbs. 4 oz. he quickly stopped gaining weight and started loosing. I wish we had taken nudey pics at this time because he was a sick boy! You could see his ribs and his legs were just sticks.

Our ped. started paying attention to the weight loss at his 2 month visit. She consulted Vanderbilt and they scheduled an appt. for several months away and recommended stopping breast feeding (heart breaking!) and starting a special formula, Neocate. When Asa still only gained tiny amounts he was brought inpatient for testing and a NG tube. This was Feb. 2008 and Asa was 4 months old and 10 lbs.

The NG tube went in his nose and down to his belly. Barry and I had to learn how to pull it out and put it in the other nostril before we could leave Vandy. Barry was a great learner!

With the NG, Asa did gain weight and perked up. He finally started gaining weight and making eye contact and smiling. Unfortunately he didn't stop puking but he was gaining and eating a little by mouth.

In April 2008, after 2 months on the NG tube (and Easter Sunday) we wanted to try a tube free feeding trial. Asa must have overheard us talking because during the night he pulled the tube out himself! I kept detailed feeding journals of intake and pukes. For a while Asa held his own but then he started on the down hill spiral again. In July 2008 Asa was down to eating 9-12 oz a day! A DAY! He was loosing again and we decided it was time to get the G-tube. He got a Mic-key button in July 2008. BTW, I'm not sure why it is called the Mic-key, it has nothing to do with Mickey Mouse but I certainly think they could make these in fun shapes or colors to pep them up a bit!

Right before surgery! "It's all good", a bit of positive spirit!

Right after surgery. They did it laporscopicly and went in his belly button. They made him a cute little baseball bandage.

We feed him at night for a while and then with a big syringe while we held him. Kinda like this step up we use for meds now.

It was hard to hold him and still have enough hands and the reach required so we eventually got a feeding pump and I wish we'd done it sooner! We could sit him up at the table and be hands free to help him play with food and oral feed. The pump also allowed us to feed on the go. I could just pack the pump in the cute little backpack and take it with us. Then I'd hook Asa up when it was feeding time. So much easier and less stressful!

Eventually Asa started trying to hook himself up! He knows where his tubie is and will point to it if you ask. It is just another part of him, like the belly button, ears, eyes and nose.

And in case you were wondering, you can do anything with a feeding tube that you can do without one! You can swim in a pool, ocean or lake. Asa loves the water!! And the tubie isn't the reason the big kids want him to have his own pool! He likes to skinny dip!! OK, I prefer he skinny dip cause the on and off of swim diapers and trucks is just crazy at your own house!

This is one of my favorite tubie pics!!!

At this point, we don't do much feeding into the feeding tube. We can usually wait him out if he won't eat during a meal time. I'm sure his blood sugar drops but so far it is managable. We use the tube for a couple of meds but sometimes Asa will take those by mouth. What we mainly use the tube for is draining and venting him. He gets so full and miserable because his tummy won't empty so to keep him from puking we drain his stomach contents into a farrell valve bag or a cup. There have been a couple of times we've used the tube for fluids and Pedilyte when he has been sick. With mito it is likely he will dehydrate quickly and that puts more stress on all his body functions so we try to keep him hydrated all the time.

I was so afraid of the tube but it literally saved his life back in Feb. 2008. By the time we got the G-tube in July 2008, it was so save my mind! Feeding your baby should be a fun and enjoyable experience, not a fight to get 9oz a day in him! I'm so thankful for that little tube in his belly!!! If I designed feeding tubes, I'd make them little hearts!

Oh and I added this one because it made me laugh when I came across it! When I say Asa didn't gain head control until after his 1st birthday, I have proof!!!! Who gets a Bumbo as a first birthday gift! Bless him!

I hope this might help explain our tubie story better. If you have any questions about tube feeding then just ask. I think being open and honest is the best way to educate and advocate for tube feeders!

Inchstones, inchstones and more inchstones!!!

2011-02-08T21:45:00.000-06:00

This has been a pretty exciting few days. In little ways but each little thing is HUGE to me!

Yesterday, I was on the treadmill and Asa had been playing on the couch. After a while he got bored and wanted down. I was trying to tell him to lay down and slide off. He understood what I was telling him but he wasn't about to slide off the couch by himself! Once I got done I helped him down and we did it several other times. We've also worked on it today. He is almost doing it on his own now!!! If he is sitting with me then he will roll over and slide down. If I'm not sitting next to him then he is more hesitant! Still this is progress!! Huge progress! I'm sure I won't be so excited when I can no longer put him in the chair and trust that he'll be there when I turn my back!

He also cruised along the couch 3 times with no one helping him. In fact we weren't even trying to lure him! We were just hanging out with him standing at the couch (inchstone enough that he'd stand up alone!) and then he shuffled over to me! So fun!!!

And....can you believe there is an AND.....Asa has been going from sitting to laying down on his own. He can sit fine but he can't get into or out of sitting alone. So he had been laying down on his own when Gracie taught him a trick! She holds her finger like a gun and says "bang, bang" and he falls over and lays down!!! By the time I got my camera out he was so gigglely that he just wouldn't sit up at all! We were all cracking up!!

And another AND! Asa ate a whole Gerber Entree meal!!! It was mashed potato, gravy and carrots. He can't really handle the chicken so good but I did chop up 2 pieces and he got them down. He starts out really chewing but slows down so much and by the time I call it or he signs "done", he is just rolling the food around! Oh and did I say it took him 2 sittings to finish it? He had part of it at lunch and part at supper. Still it was one less cup of pedisure for the day!

Hmmmm, that may be all for now. There are other improvements like he is humming and grunting more. Kinda like a conversation I guess. Still no words but he sure thinks he is telling us stories sometimes.

And he is steadier when we hold his hands to walk him. In fact he will squirm away from our carrying him so he can try to walk! I've got his gait trainer stripped down and I'll have to take a pic of him to show you!

He is also obsessed with our barstools and the aquarium on the bar! I mean OCD obsessed! So much so that we took the barstools away! Gotta find some cheap ones with backs and sides! He loves sitting up there!!!

So I guess this has turned into a pretty long celebration! Praise God!!! I've got videos but I can't load them onto YouTube until I get WiFi, so be patient! Of course the videos are 5 minutes of us coaxing Asa or him hanging out and then 5 seconds of his skill! That's ok though!!! They are priceless!!!

To God be the glory!!!

Wonderful Friends

2011-02-07T19:19:00.002-06:00

Yesterday, I spent most of the day with some wonderful friends. There are 4 mito families in our area and the Momas try to get together every couple of months for a meal and chatting. We mostly talk, if we ate as long as we talk we'd all be big as houses!! We started out meeting for supper or a late lunch but we'd stay until bedtime so we started meeting for an early lunch. And still, we talk until until the hubbies have to call looking for us. Yesterday, we met for breakfast so I could be back earlier. And still, I had to drag myself away at 3pm, despite meeting at 9:30am!! By the time we paid, our tickets had been kicked out of the system! Now just so you don't pity the restaurant we choose, there was plenty of available tables all day and we tipped our waitress well! I figure she is probably thankful that she got the same tip and only had to refill our water glasses a few times.

You may wonder what we really have to talk about for that long. We do have tons of medical talk but we also have regular talk. We shared tips on hotels in Houston, how to get nursing or the diapers we need, different therapies and meds, specialist but also talked about school and homework, cooking and hubbies. I've always thought being a stay at home mom is kinda isolating but being a sn mom is even more isolating! I'm so thankful that I've got this great, funny, smart, fighting group of women to give me confidence and cheer me on!

And one of these awesome families is the Culley family!! They are from Millington. Emily and John have 3 kids and their youngest has a form of mito called Leigh's. I don't think many would argue that it is a devestating, severe form of mito. But Jackson's family is so amazing! They fight, advocate and work their hineys off to get the best care and info and help for Jackson! Last year they held the 1st Annual Mito-What? 5K in honor of Jackson. The proceeds of the race went to the UMDF. Nearly $20,000!!!! How amazing is that! Just one family touching the lives of others, spurring some wonderful ladies to organize this run and more than 500 runners, walkers, families and voluteers turning out to raise money to find a cure for Jackson and Asa and Bryan and Emma!

And it is that time again! The 2nd Annual Jackson Culley Mito-What? 5K will be on March 26 in Millington TN. If you are local and a runner, this is one well organized run that you'll want to do over and over. If you aren't a runner but want to come with our family to walk and raise money then we'd love to have you! If you can't come but want to be part of the amazing day then you can sponsor me as a Mito Hero!! I need 15 friends to donate $10! That's the price of one lunch out!

And the sooner you register the better! Only the first 200 are guaranteed a shirt. And the Mito Hero money needs to be collected by March 1st! That's 2 weeks away!!! Really just 2 weeks!!!! I'm printing and mailing our registration in this week! You can also register online! It's just when you do it X5 that processing fee adds up!

So if you choose to participate you have several options!

1. You can register and run or walk with us on March 26 in Millington.
2. You can help me be a Mito Hero by sponsoring me for just $10.
3. You can share with all your friends and family. Maybe they'd like to compete or walk with us. Or maybe they'd just like to help out a Mito Hero.
4. If you are a business and want to be a sponsor there is plenty of room for that too.

In all cases, go to the Mito-What? 5K blog for info and registration. The registation link is on the upper right hand side. I know Asa, Jackson, Bryan and Emma would appreciate you standing up for them! And so would their Moma's because despite our marathon breakfast we didn't cure mito or even develop a treatment! Who knows though, with your help we will be one step closer!!

Feeding Tube Awareness Week

2011-02-06T20:12:00.004-06:00

Today is the first day of Feeding Tube Awareness week! Who knew there was such a thing! I wanted to share this with you because before Asa, I had never seen a feeding tube before.

It just so happens that this week in February 2008, we were inpatient at Vandy. Asa was 4 months old and we had finally gotten someone pay attention and check Asa out. Asa was not growing despite our changing some things so we were admitted and a NG tube was inserted. An NG tube goes in the nose and down to the tummy. After several months of this we tried to be tube free but Asa still wouldn't eat and grow so in July 2008, Asa had surgery and a G-tube was inserted into his belly. He still has this today except we don't use it for daily feeds now. Now we use it to drain his belly and to give meds and an occasional feeding.

My how that little tube has saved us! It literally saved his life when he was so tiny and starving. It has saved us from going inpatient several times by allowing us to keep Asa hydrated when he is sick. It has saved my sanity when I have fought with Asa to eat! As weird as it is, I love that tube!! And I love my tubie boy! As you can see, Asa loves his tubie too!

A great weekend!

2011-01-30T20:42:00.004-06:00

We have had a great weekend! The weather has been wonderful with sunny skies and highs in the upper 50s and lower 60s. There is a feeling of spring in the air.....too bad they are predicting more snow this week! Asa even went to school in short sleeves on Friday. He rode his little Power Wheel car outside too! He doesn't turn the steering wheel at all so I just turned it so he could ride in circles. He was more than happy!

On Saturday we took a road trip to Nashville for a mito meeting with the UMDF chapter there. It's been a while since we've been to a meeting and it was great to see everyone again. They are such special people! I can't believe it's been 2 years since we joined this group! That means it's been 2 years since we got a diagnosis. Our first meeting was the same month as our muscle biopsy results! How's that for God's timing!!

Asa did great on the ride and didn't have a blow out diaper until we got home! How nice is that! He had a total meltdown but at least that was at home too!

Today was a wonderful day with our church family and then lunch at my mom and dad's! Sundays have to be my most favorite days of the week!!!

I love Asa's bedtime now that he is in his big bed! With the crib we'd rock and sing and rub his face and rock and sing somemore. Then he'd wake up when we laid him down so we'd start over! Now we just crawl into his bed and he pokes in my ear until he drifts off to sleep then I get up! I confess that I often doze off too and I like it! Laying with him also gives me time to think and pray. The way his eyelids get heavy as he is drifting off and the sound of his breathing getting slower and rhythmic....it is so relaxing! We have so much to be thankful for!

Tonight Asa showed off a new skill at bedtime. He started out playing in my ear like always and then he reached for my hands. I often hold his hands when my ears get sore from a days worth of poking. But he didn't want to hold hands! He picked up my hand, found my pointer finger and stuck it in my ear!!! I have no idea why he loves ears so much but I guess he was trying to show me! I still don't get it by the way! I tried taking my hand down and he'd grab it back. I tried just putting my finger near my ear but nope, it had to be in my ear! He tried different fingers but always went back to my pointer finger! I thought I might have to lay there with my finger in my own ear until he drifted off to sleep but he finally decided he wanted my ear back to himself!!!

Here's a pic from last week. We'd been shopping at Target before school and he took a nap in the buggy. He started off in the seat part of the buggy but threw a fit so I moved him to the back. He rode happily and then got sleepy. I propped him up on his backpack and he got comfy! He always pulls his shirt up over his belly so he can play with his button or belly button while he goes to sleep. Of course, he really prefers ears but buttons and belly buttons will do in a pinch!

And my Daddy "MacGyver"ed a wheelchair for Asa! Who doesn't have extra bycicle wheels and car seats laying around?! We are trying different seats and a basic stadium seats seems to work best. As soon as we put him in it he pushes off but then he toys with us and won't go anymore! I don't know why he won't perform with all of us standing around staring at him with our cameras out?! And this is actually Daddy's second project. He also put a car seat on a furniture dolly (mover) and tied a rope to it! Now there is entertainment for the big kids who pull Asa around and for Asa who gets to ride! I have one smart Daddy!!!

Exciting plans!

2011-01-25T08:33:00.002-06:00

First a picture I posted on Facebook last night:

Asa saying his blessing at supper! We always say "Asa, say your blessing" just like we do with the other kids but he usually just ignores us, like he has no idea what we are saying. Last night though he covered his eyes while he was still drinking his water! So cute!!! This is actually a retake so I guess he said 2 blessings!

Now onto our exciting plans that you can be part of! It is time to get in shape for the 2nd Anual Jackson Cully Mito What? 5K in Millington TN! The race is March 26th. Follow the link in the upper right corner of the race blog to register online!! Or if you aren't local but want to do something to help Asa and all those who battle mito you can sponsor me as a Mito Hero! I only need 15 sponsors at $10 each. You can email me if you want to do this and need our address or paypal.

This race was amazing last year and it was only the first year so I can't imagine how great it'll be this year! There were hundreds of runner and walkers and more money was raised than was expected! I think the total donated to the UMDF was around $20,000!!! How much better can it be this year!

Like last year, I have big plans to run the 5K! Yes, last year I quit and did the family fun walk. That was great too but I really want to challenge myself this time. I have no will power though! NONE! And I get bored easily. Not a great combo! Still, I'm gonna follow the plan and see what happens! I may be the last one in but hopefully I will make it back!!!

I'd really, really, really love to have a ton of people there for Team Asa. Whether you are a walker or runner! I know my cousins are signed up and will be joining us. And in my true procasitinator fashion I haven't even registered us!!! It needs to be done by March 1st though!!! So don't do like me and wait until the last second!!!

And like Asa, we are always thanking God for you and your support in our prayers!!!

Report card day!!

2011-01-18T22:15:00.000-06:00

Asa got his very first report card today!! Now if you are picturing a single page, folded with 4 or 5 grades on it you are wrong!! He doesn't get A,B,C,D or Fs. He doesn't even get the "satisfactory" or "needs improvement" marks. Nope, Asa's report card is....different!

It is 11 pages long! It has been compiled by no less than 5 people! Most of it is broken down into 2 sections, annual goal status and objective status. So he is graded on the smaller objectives that make up the bigger goal. It is very detailed! His grades are numbers not grades. A 4 means the goal is met. A 5 means the goal hasn't been met but will likely be met. A 6 means it isn't likely the goal will be met by the end of the IEP. That's the big goals. He can also get a 1a,1b,1c,1d,1e,2a,2b,2c,2d,2e,3 or 4. Fun, right!!! :-)

And keeping in mind that Asa has only been working on this goals since October, you can imagine his scores were low. I could go through each one for you but it's 11 pages long! If you want details just ask. It was a little hard to see the numbers broken down so much and lots of low scores. Kinda like how I felt when Cade had a C in spelling!! I know, you read my blog and see my typos, how much should I expect! Lol!! But back to Asa, it wasn't fun seeing those low grades.

But then I read closer! I saw the notes the teachers wrote about Asa. Not the scores, not the numbers but what they thought of my baby! Things like, "We love having Asa at school!", "Asa's working hard!", "He's precious!", "We have fallen in love with Asa.", "I expect great things from him." and more about how he socializes with others in the school and how he has many friends outside the classroom! Seriously can you tell the tears well up in my eyes!!!

In only 2 months he may not be checking off his goals at super speed but he is being cared for and taught by people who truly care about him!!! I really do love his school, his teachers and therapist! And so does he mostly!

Asa usually gets excited when we head to school. We talk about where we are going and we do the sign for school. When we pull onto the street and see the buses he gets squeally, kicks happily and starts signing! So cute! He had a different reaction today! He missed school all last week! As we turned onto the street he saw the buses and turned his head to look out his window! No kicking, no squealing! I was talking and signing school and he just stared out his window. I finally snapped my fingers so he'd turn his head towards the school. He looked and turned right back to his window!! The little booger was avoiding me and the school!!! It really cracked me up! He may not have words but he communicates just fine!!! Even after all of that he still dropped off fine and had a great day with no meltdowns!!! I love that little boy!

Oh and a funny lesson! One goal involved moving forward to get a toy while on his belly. Well Asa doesn't do this at all! He barely gets up on his arms, not hands, and doesn't pull his knees under him. Then tonight I watched as he kicked, rocked and pulled his knees in a little so that he could inch forward to get a toy!!! How exciting! An almost, sort of, booty shake army crawl for a toy!!! And he is only 3!!!

An update...

2011-01-17T20:22:00.000-06:00

I realized today that's it's been a while since I blogged or updated. I guess I put snippets on Facebook so I forget to do a longer post on here. Maybe I should just copy and paste all my fb post daily!

In the past week we've all passed around a cold. Asa didn't go to school at all last week. We were out for snow a few days and then he was sick. He ran a slight fever, had a runny nose and a cough. The most troubling symptoms was extreme crabbiness and lack of sleep! He'd wake up from a stopped up nose or coughing and not go back to sleep. Then he'd be soooo grouchy! The best thing about his illness was that he was an eating machine!!!!

His GI system wasn't so happy but we used more Zantac and he was doing good. He'd wake up and ask for food. I hesitantly give him his cup of Pedisure. He'd suck it down and sign more. He had so many new foods and he was sick! I couldn't believe it! Don't get me wrong, he was throwing up most evenings but he didn't seem too bothered! Usually when he is sick we have to stop the pedisure and just give him pedilyte. Then we spend a few days working him back up to pedisure and then food. I couldn't be happier that he kept up the eating pace and even stepped it up!!

In other news....Anna turned 14 on Saturday! In true teenage fashion she couldn't make up her mind what she wanted to do for her birthday. Friday afternoon she decided she wanted all the family to join us at a Mexican restaurant...that night! She better be glad we all love her! Barry's patents and my parents plus some cousins and her BFF met us and we had a great time! Then she decided she wanted to go the movies with her BFF and the boyfriend on Saturday!!! The BOYFRIEND!!! My first reaction was NO! Then I compromised! I picked the movie and we all sat together. And if she decided to make out with the boy, I'd make out with her daddy!! Lol!!! I picked an action movie with no love scenes! We really did have a good time! I'm glad Anna made some fun memories and had a good birthday! She didn't really ask for any gifts just our time and attention! A day for Anna! Thanks to my mom for keeping the little people so Anna could feel special! Anna is such a great girl, uh young lady?!! She is my helper and can almost read my mind! She doesn't ask for much or whine too often! That may change tomorrow so I'm being thankful for them today! I figure if she's made it to 14 and is still so sweet I better hold on cause she's due for a fit at any moment!!

So we get back to our normal tomorrow. Back to school for everyone and hopefully leaving these sickies behind for a little while!