Celebrating Inchstones: A little update....

Tuesday, November 1, 2011

A little update....

First of all, I got an email from the GI NP that the Gastric Empty Scan was normal. I know when you hear "normal" you celebrate but in this case it isn't completely good news. If the test had been bad we would have options to help stop the gagging and puking. But just because it was normal doesn't mean everything is OK. It just means it was OK from 8:30-10:30am last Friday. Makes sense, right? Even as I opened the email Monday, Asa was gagging and couldn't eat until 10:30am. And he has refused some of his favorite foods and only wants his cup of Elecare. But the test was normal!

On the plus side.... Asa had an eval for aqua therapy today. I think he'll really like the aqua part and hopefully tolerate the therapy part! We have to be watchful for several thing though. First, the pool may not be cool enough and just the warmth can tire him out, think of your muscles after a hot tub. Second, it is an open area. There are 3 pools, a regular, a hot tub and the cool. There are many classes and therapies happening at once and it can get loud. Hopefully he won't be bothered too badly. And third, there's a no puking policy! Can you believe?! I'm being sarcastic, of course, but guess what Asa was doing during the eval....gagging and spitting up! Nice huh. So I'll get in the pool with his trusty puke cup and watch for signs of trouble and catch puke if I need to. He starts next Thursday because he has an eye appt this week.

And now some shout worthy videos....

When I picked Asa up from school he was in the gait trainer standing at the door. When we opened the door he took off outside! Now he can do pretty well in big open smooth floored places but I've never seen him go like he did today! I backed him up some so i could video and this is what I got....

Now the school gait trainer is an older model than ours and it is light so i thought he wouldn't be able to do his at home. Boy, was I wrong!! Our backyard has a back slope so that helps but he was really going! And I might add, this so the same hill that Cade and Gracie learned to ride bikes down when they were 4. Asa is 4 and learning to go down it differently but I'll take it! :-)

And if you aren't drop down impressed just go watch the video from early September where I'm trying g to coax him to walk on the smooth ground and was all tears. We've come a LONG way, baby!

2 comments:

gg said...: Crying as I watch the videos. What a blessing...God is SO good!!!; November 2, 2011 at 11:44 AM
marie clare said...: Wow, wow wow!!! Just saw this, look at him go!!!; November 27, 2011 at 9:18 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!