Celebrating Inchstones: Therapy Update

Thursday, February 7, 2013

Therapy Update

Just as a refresher for my memory I thought I'd review Asa's current therapy routine. Asa gets speech, OT and PT at school. He has speech on Mondays and Wednesdays for 30mins each. He was going in with a group for a little but now he has the SLP all to himself. He gets OT once a week. They work on things like copying lines, cutting and working puzzles. Asa tends to not look at what his hands are doing many times so all the skills are really helping. Asa also gets PT once a week. I'm stunned at how quickly he's gaining new gross motor skills right now! This has always been the area he struggles the most and now he is excelling. They are working on going up and down the stairs, pulling to stand and working in a tall kneel. Asa is also doing extra therapy. We started doing feeding therapy again a few weeks ago. Asa started wanting to eat but he was having trouble chewing and swallowing efficiently. So far it's been a lot of fun! I'm happy to know that even though he is slow he is doing all the right things to swallow without choking. The SLP is also working with him trying new foods and some sensory stuff. We've started using taco seasoning on a lot of his food. He has eating broccoli twice because it has taco seasoning on it! He's trying a lot of new foods! He's done Aquatherapy for over a year now. It went really great for a long time. Asa's first steps were in the pool. His first real walking was in a pool. The pool is awesome! Several months ago Asa got really tired of working in the pool. He screeched and squealed nearly every week. Just when I was thinking he was done with it, he flipped and started enjoying the water again! He did lose it this week though. We try really hard to get him out before he gets exhausted. That way he politely signs "all done", gives hugs, waves bye and gets out and redressed. This week he just fell apart. He screamed, cried, gagged and hit himself. As I tried to change his clothes he hit himself and the changing mat, both of which sounded like I was hitting him! Goodness, I ready to get him out of there! I've turned in an application for Asa to try hippo therapy. There are only 25 spots so I'm not sure if he'll get picked but I tried. Other years I've filled out the application but backed out before turning it in. I'm not sure how he'll feel about horses and I'm highly allergic but I thought we could at least try it out! I know this a pretty dry post. Maybe I'll get some pics in next time!

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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!