Celebrating Inchstones: More pics, less talk!

Thursday, March 18, 2010

More pics, less talk!

I've been short on pics lately, right! Well, get your fill tonight!! These are just over the past week!

PT this week!

Asa decided to tackle the steps this week!! He was doing his usual walking and then veered left, towards the steps!! He did well though and it became his new favorite therapy! He was great at up, going until his PT was tired, but down.....not so easy!! He only did that a few times with any kind of proper form!

Then, today, he thought he'd try out the wedge mat!! A little harder since it gives a lot. Oh, and he wanted to try the balance beam but it was a little too high for him to step up on!!! What an adventurous boy!

He has been after this light in the van for a few months now! He loves, loves, loves lights! This one has been out of reach until today. Not only did he reach it but he could push it and turn it off and on!

You can see he is reaching up just as hard as he can to get it too!! I know it looks like he is just reaching up and touching a light but for Asa this is sooooo hard. The picture doesn't do it justice at all. Tons of effort!! And yes, his shirt is completely opened! He gets so hot that I opened his shirt, opened van doors and window, 65 degree weather would be enough to keep him cool while we waited on the 3 o'clock bell. It wasn't, he was red and sick when we got ready to leave after getting Cade and Gracie from school. Time to break out the cooling vest!!

Asa in the gait trainer on the deck wearing his pump backpack! Such a big boy! And the muscles on the shirt are fake.....just in case you were wondering! :)

Asa's new PECS cards. He gets to make choices, yes or no! This is just the beginning my friends! We have a great plan for him!!

Feeding therapy....not so great. Sensory therapy.....YAY!!! He played in the yogurt for a long time!

And I don't have pics but Asa started walking while you just hold his hands this week!!! YAY!! This was a long term (6 month) goal. Well, the 6 months came and went and I wasn't disappointed cause I had my doubts about this goal! This week though, Asa felt secure enough that when we'd just hold his hands, he'd keep on stepping!! I don't think he made it the 5ft set in his goal but it is great progress!!! He has felt so firm lately. Usually we sit him down and his legs just collapse, ready to sit. Lately though, he locks his knees and stays in standing. It is an odd feeling to feel him stead and not so noddlely. As my mom pointed out today, why are we so amazed by this. Hasn't this been our prayer for so long. Why are we surprised when it starts happening! Woooo Hooooo!!!

2 comments:

gg said...: All the things Asa has accomplished in the post are fantastic, but walking while holding your hands...that's a whole different level of excitment!!!!
WTG Asa!!; March 18, 2010 at 11:51 PM
Kim and Asa said...: Cheryl, I thought I'd add that in at the bottom of all the pics.....you know, see who was paying attention! ;)

I can't say it is a consistent skill but it is progress!! We are on our way!; March 19, 2010 at 6:11 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!