Celebrating Inchstones: Roller coaster

Tuesday, March 1, 2011

Roller coaster

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.

4 comments:

Sarah said...: This picture is so great!

I love that Asa was walking in the last post! so sorry though that he's now not wanting to :(; March 2, 2011 at 1:11 PM
Sara Eaton said...: Way to go Asa!! Always in our hearts and prayers!! ♥; March 2, 2011 at 1:45 PM
~Jana~ said...: I understand your feelings and frustrations. It really is like a roller coaster sometimes. But, boy oh boy what a cutie he is! Something about his little face or hair reminds me of my little cutie. He doesnt really talk much either but he sure does let us know what he wants!!;); March 2, 2011 at 2:59 PM
Clara-Leigh said...: O my Kim, this is the true mystery and madness of stuff you get with these Mito kids, especially where the brain is involved. He sounds like Garrett with the screaming and not walking when he should and the frustrations coming out as SCREAMING!! I often wonder what our little dude would be like were his brain not affected. I know it has to be hard for him "in there," just as it is hard for us "out here" sometimes watching and reacting to his frustrations. I am sorry you are having to try to figure it all out. I LOVE, LOVE, LOVE hearing about the kitchen mischief and the painting, especially with the spoon....just don't tell the speech or feeding therapists!!!!! Keep 'em on their toes, Asa!!!!
Love,
CL; March 2, 2011 at 5:21 PM

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!