Celebrating Inchstones: Thursday

Thursday, February 4, 2010

Thursday

Asa has had his first mobile accident today! When we got home this afternoon I sat Asa in the floor and we all went out to get groceries in. Cade and Gracie had made it back in but Anna and I were still at the van. Suddenly we heard a thunk and then crying. Then Cade and Gracie talking and calling me. When we got in Asa had been scooting and pulled on something. He slipped and fell backwards, bumping his head! He was fine but all of the excitement made him get gaggy and pukey and tired.

Then tonight in the kitchen he did the same thing. I guess this is the beginning of many falls we will experience!

At PT today Asa used the Theratog suit again. Everyone comments on how much better Asa looks in it. Not just Asa's therapist but the other therapist in the gym. It is exciting to see them all so happy for him. Nancy had the booklet and she took some measurements to order his own set. There are a few options and she wants to be sure we have it all covered so she wants to ask the OT about it too.

If you can't tell, the suit is actually a back vest, front vest and then hip supports. It all velcros together and is very snug to give him a little support but mostly just pressure. There is also a part that velcros to each side from under the arm to the knee. And then the whole set includes ankle or wrist cuffs and straps. It is very involved but seems to help by giving him a little feed back when his body gets out of line. Asa tends to flop open so we get him into a more closed position and velcro the pieces together. The white tabs in the first pic are the pieces of velcro. Do you remember that Asa has an issue with velcro! He hates the sound!!! He has gotten better but let's just say by the time we are done with him, he'll be completely over it!!! :)

At feeding Asa seemed interested but he is just so hesitant. I asked if I could try to feed him the babyfood. He let me give it to him but if Beth tried, he refused! He had a few bites of oatmeal (a first!) and some babyfood. I asked how therapy got turned into me forcing him to eat while the therapist was the good guy playing with him!! I'm only kidding. It really went well and I'm looking forward to trying more oatmeal tomorrow!!

I also had a chat with another therapist today about mito. She has some biology background and is gonna look up any info she might have. She was hesitant in asking about his diagnosis. I told her I could talk to a brick wall!!!

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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!