Celebrating Inchstones: Much Better

Friday, March 15, 2013

Much Better

Asa is feeling sooo much better! He could've gone to school today since it'd been 24 hours since his last bout of diarrhea and well over 24 hours since his last fever. I kept him home though so I could monitor his energy level. He's been sleeping 14 hours at night plus a 2 hour nap! He skipped his nap today and you could tell!!! We had a fun day today and I'm glad he was home to enjoy it! We started out our school but as the morning wore one it became clear that the sunshine and warm temps were not to be missed! We rushed through our necessary school work and then had a fun Friday outside! We had the windows and doors open while we worked. Asa has recently learned to open the deadbolt on the front door and open it but he hasn't gone out. The back door has a screen door on it and we've caught him going out of it on his own! He was following Gracie around on his tricycle when I could tell he wasn't with her anymore. We looked and he had pushed his tricycle out of our yard and into the rough dirt strip that leads thru the woods to my parents house next door!! He had gotten stuck in the big ruts and was pretty mad about it!

Later this afternoon we had his Power Wheels out. He was riding all over and we really noticed how intentional his driving was. He was squeezing thru some tight spaces! A few minutes later we could hear the car moving away from us. I followed him at a distance. He never looked back or seemed to hesitate for a second! He headed straight for the trial to my parent's house. This time he chose the smoother but longer route. He was a decent driver. At one point the path narrows and gets close to the road so I yelled when he got there. Of course, that only made him look behind him while pushing the gas! It's a wonder I get him in the road! He was great until I spoke up! He made it all the way to my mom's though! No slowing him down!

All of this is truly amazing when you remember that it was just this time last year that he started walking with the walker! And even then he was scared and hesitant. No more!! This boy has things to do and he on his way!!! Thanks so much for all the love and prayers for his speedy recovery. I'm so thankful that this was just a stomach bug! Many of our friends are fighting much, much worse tonight! Praying for all my tough mito kids and families!!

No comments:

Post a Comment

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!