Celebrating Inchstones

Friday, June 18, 2010

Asa was still pretty clingy and needy today but I did see a ray of sunshine today!

While we were doing some cuddling, I asked Asa where his nose was. And he covered his nose with both his hands! Then when I asked where his ear was he stuck one finger in his ear! He had some trouble with his eyes but I think he knows where they are. When I asked about teeth, he chomped with his teeth! He already consistently shows us where his belly button is and his toes, he loves his toes! So I was very impressed with his self awareness skills. Not so thrilled when he got obsessed with sticking his fingers in my mouth to investigate MY teeth!

And I may be on to why he is so out of sorts. He has had his hands in his mouth so much more the last few days. Even though he is a little more oral, he still doesn't really gum his toys or hands...unless he is teething. Now trying to look into an oral defensive kids mouth is not an easy task so I've had no such luck at naming which tooth may be causing the trouble. In fact, he is behind on teething and when they do poke their heads out, the teeth still take a while to completely come in. So I'll keep on with my Motrin trick and hope it gives us both some relief!

On the eating front things went well again today. He had a yogurt and some mushed up Spaghettio's for lunch. I just fork mashed the Spaghettios so it was quite textured and he did fine. He also took a cracker to his mouth and licked it all on his own today! And I pinched him off some buttered toast and he opened for it. After several bites he picked the toast up and licked it on his own. I know licking seems weird but for him to just take food this far is huge!!! I'm so tickled!

I still haven't heard anything from Dr. K's office about the blood work we had done a week and half ago. I'm waiting for any results before I call our neuro to schedule the EEG. I did call our local hospital and another clinic to see if we could have the EEG done here but it was a no-go. They can both do the EEG but not the 23 hour video EEG. I tried to tell them we could bring our own video camera!! So looks like that will have to be done at Vandy! Boy I can't wait...insert sarcasm!! :)

1 comment:

gg said...: Sounds like Asa (and you) had a great day (minus a little clinging). Love him putting both hands over his nose...it must have been too cute; June 18, 2010 at 11:01 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!