Celebrating Inchstones: Our new toy!

Saturday, February 20, 2010

Our new toy!

We have a new toy here at the Wilson home!!! I'm so excited because I've been pouring over the classifieds, CL, the sales ads and finally, this week, I just happened upon a super sweet deal!!!

Remember Asa on the treadmill at therapy......

Now he can do the same work at home!!!!!

YAY! He really likes it too. He walked for 5 minutes on Friday and then again this morning. He wanted to keep going this morning but we had things to do!! Can you believe it! I have visions of him walking on his own one day! Oh, and it is good for the rest of us too! And to top it all off, it was a return from Sears and more than 60% off!!! Seriously sweet deal!!

I really have been pouring over the ads because I wanted to be able exercise but with Asa's numerous sensitivities it makes it nearly impossible to just get up and go. We debated about a treadmill or elliptical and personally I wanted an elliptical. But I had a little bit of hope that the gait trainer would fit on the treadmill. And guess what it does! BTW, no need to worry....Barry was holding the gait trainer while I was snapping pictures! Usually I sit behind Asa and help him remember it is "step, step, step" not push or just hang!

The whole theory behind Asa walking on the treadmill is a fairly new therapy. There is proof that the muscle has memories. So if his muscles are "trained" to take steps then when he gets stronger, his muscles will have those memories. This is so exciting for me! I know it seems silly but I can't help it!!

And since I mentioned Asa's sensitivities.....we took Asa to Gracie's basketball tournament today. This was his first time at a basketball game. We swapped around going to the game and staying home keeping Asa because it is so loud and the whistle and the buzzer....not a place he'd usually like. But he proved me wrong today! He did great!!! My Daddy took him out once and Moma again but for the most part he was great!! He even scooted for a minute. I bet he could really book it on that floor if we let him go!

And later we drove through a car wash. Again, loud, unpredictable, bumpy....but he did good. He got a little bothered but didn't get sick. In fact, he hasn't had to be drained at all today! First day in a while!

And Asa got his PT progress report this week. They used to call it a re-eval but now it is a progress report. I thought that made it sound cheerier but what if there is no progress or not much, despite lots of work. Either way, he was graded this week. His gross motor age is now 8 months! At first I was a little disappointed by this. After all, he has made great progress by getting mobile but once I thought about it, I would compare him to an 8 month old. So he is still very, very delayed and still moderately hypotonic but he has made progress. He isn't exactly catching up but still making ground. Inchstones maybe but hard earned inchstones!

And this last pic is just because!!! Asa may not eat but he loves him some McD's!!!! He played with this fry container and straw all afternoon!!! Gives me ideas for next Christmas!! :)

1 comment:

Heidi said...: He-HE, love the last picture! Unfortunately for us, Jack is no longer satisfied with the garbage on the floor of our van! The new toy is awesome, he looks like he's having a lot of fun too :) Great pics--give that sweet boy a hug and kiss for me :)
Heidi & Jack.; February 21, 2010 at 5:09 AM

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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!