Celebrating Inchstones: Distractions

Thursday, March 17, 2011

Distractions

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!

1 comment:

Sarah said...: I think the wheelchair is a great idea! i hope that it helps him with some independence!; March 18, 2011 at 12:28 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!