Celebrating Inchstones: Asa is better!

Saturday, June 26, 2010

Asa is better!

Asa is feeling better! Well, he isn't running a fever at least! He is still pretty ill and crabby. But he was doing this before the fever so this may just be his new toddler personality!

He has been so weak that he can't even sit up in the floor without slouching and whining. He is happier in the highchair where he has support. He did scoot around some last night. He didn't eat very well but this morning he gobbled up his Pedisure. Yesterday he didn't even finish 2 bottles. He had some applesauce and pudding though.

And I was thinking our neuro here was been abrupt and quick with me about Asa's EEG but his last email was much nicer and he too said we could stop the EEG as soon as we had what we needed. So if we believe Asa is having startle seizures and we go in there, hook him up, trigger a few seizures or autonomic episodes, then we can go home!! How's that for a plan. I've been thinking of the best way to startle him and have decided that I'll have to bring Cade and Gracie with me cause they always seem to bring it out of him!

And lastly! Yesterday I got to mow the yard!! 2 blissful hours on a lawnmower, all alone, listening to my iPod! Barry said he doesn't like the way I mow though. He says I go in a circle over here and then a circle over there! Of course I do but otherwise I'd be done too soon!! Anyway, the first song on my iPod was "Miracle of the Moment" by Steven Curtis Chapman. I used this song in a slideshow I made for Asa's first birthday. It is a good reminder for all of us to just enjoy life. After this song was recorded Steven's little girl died when his older son backed over her as he backed out of the driveway. You'd think this would be enough to cripple a family but Steven has gone on to write some beautiful songs of worship, praise and faith. So even as we know Asa's life will be a struggle and will likely be shortened, we also know that none of us can know the future and we need to celebrate and worship each day that God gives us.

I can't get a video to upload (and I'm blaming dial up not operator error!) so if you'd like to hear the song click this Youtube link!

http://www.youtube.com/watch?v=rResKXjKqjQ&feature=youtube_gdata

1 comment:

Anonymous said...: glad he's feeling better. he'll get rev'd back up soon. a book kim - i'm telling u...you should write a book. (as if you have time), but i laugh and about cry everytime i read your posts. unusual!~Robin; June 27, 2010 at 8:36 PM

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!