Celebrating Inchstones: Asa update

Friday, February 12, 2010

Asa update

I haven't been updating about Asa each day. I thought maybe everyone needed a break from hearing about each burp and poop he does each day!!

He had his 6 month PT re-eval on Wednesday. He started meeting a few of the old goals as soon as they came off the printer! Goals like bearing weight without locking his knees. Other goals he still needs lots of work on. Goals like pulling himself forward with his arms while he is on his tummy.

Bottom scooting wasn't on his goals but getting mobile was so he is all good!! And a FYI tip: Bottom scooting on carpet without a diaper can lead to carpet burn in not so fun places!! And puddles too!

We brought home the Theratog suit that Asa has been using during therapy. We'll also be ordering his very own! We were concerned that he might get too hot while wearing it under his clothes. He'd had it on for several hours and was so sleepy while we were grocery shopping. I noticed he was looking especially droopy and checked. Yep, he was getting too hot. In the middle of the check out line I started undressing him and undoing all the velcro!! I'm sure we made a sight but once I got it off, he stared cooling down and was fine.

We are having some trouble with his tummy still, even though we have started the motility med back. Some of it might be because we have gotten loosey, goosey with his feeding. If he won't eat at night before bed then we kinda shrug it off and let him go to bed without a bottle. But many mornings he is very gaggy and spitting up mucus yuck! I don't think we skip meals that often but maybe it makes a difference.

He has also been have several "episodes". I wish I had a medical term or explanation but "episode" will have to do. He reacts to something and gets hot, sweaty, gaggy, pukey, noodley and then will puke or we vent and he'll go to sleep for a few minutes. So far this has happened when he flipped his car over, cried too hard while we went to the bus, feeling uneasy because I was only holding his hands while he stood, some unknown reason while playing in the floor and because of the cool wind while going in a store. All random, different stressors but the same reaction. He doesn't react as badly as he used to and not as often but they seem to have flared up this week. It is hard to know what will set him off. And it is sometimes impossible to spend the time needed to get him through an episode. He'd love to just stop and have calmness and be rocked and doze for a few minutes.

On the plus side, Cade got the new tobyMac CD for his birthday and we have been rockin' out in the minivan!! I looked in the rear view mirror and Asa had his hand in the air waving it around like he was dancing! It was so funny!!!

And he is pointing at stuff like crazy. Sometimes we get to where he was just pointing and he points in a different direction!! I think he is just trying to train me! I usually follow directions pretty well!

Sorry there are no pics tonight! I'll do better next time....promise!

1 comment:

Meghan Clement said...: I love that you added Asa's complete story to the page. It is so interesting to see how each child is affected differently, and how each child got their diagnosis of Mito. I think of you guys very often.
Love,
Meghan; February 12, 2010 at 10:33 PM

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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!