Celebrating Inchstones: Well, shut my mouth!

Sunday, September 5, 2010

Well, shut my mouth!

Asa has done it again! He has proved his Moma a liar! But I couldn't be happier about it!!

I have had plans all week this past week. We've had revival at church. I've had errands to run. We planned to go camping. And Asa ruined all of these plans! When he is in tip top shape, he is at least double the work of a typical kid! When he not up to par...well, I want to put my head in the sand and never leave the house!! That is how this morning started out!

Barry stayed home from church with Asa. It just became too much to fight with him and get him ready! Since it is a holiday weekend, there were many different activities going on. We tried to camp on Friday but it didn't work out. For today I made no plans! I had hopes but I really thought we'd eat lunch at my moms and then end ip back home while everyone else got to have a ton of fun. The weather was perfect for Asa though so he had an amazing day outside!!

He rode around in his little car. He enjoyed his swing outside. He used the gait trainer outside (although not much). AND......for the first time ever, he went down a slide!!! I know this sounds so boring but it was great! He LOVED it!! I started out with Gracie holding him but that wasn't a good plan. Then I held his hands as he went down. Still he wanted more freedom! Soooo I started sitting him on the slide and letting him go down alone! He loved it!!! I could barely get him sitting down before he was trying to scoot down again!!

I made him take a couple of breaks. One time Barry gave him a lick of his ice cream. Asa started signing "more" with no prompting!! Lol! I got one to share with him and he quickly just took it from me and called it his own! He got so sticky!

He was even feeling good enough that we went down to the creek where everyone was going camping. We did get to enjoy the campfire and some hot dogs!! I wish we could have stayed longer!

Asa got sick and we came home after he zonked out. He did great though!! He did endure the sounds of a four wheeler, golf cart, go cart and a dirt bike! Not to mention the sound of 7 other kids playing!! It was a fun Sunday!!!

So maybe Asa has been bored around here with just me! Maybe he needs more activity. I'm pretty sure I don't have the energy to ay like we did today, everyday!!!!

3 comments:

Susan Bishop said...: I am so glad that he proved you wrong. Maybe he is bored since all the others went back to school. Who knows? Maybe he's just glad that it has cooled off like all the rest of us ;o) Whatever it is/was I'm glad that he's more himself.

Susan; September 5, 2010 at 10:34 PM
gg said...: Going down the slide and eating ice cream, well both just bring a huge smile to my face!!!!!; September 8, 2010 at 6:42 PM
Alison said...: Kim, thanks for coming on over to Andrew's blog.......and, yes, of course you may share : ); September 9, 2010 at 9:54 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!