Celebrating Inchstones: Another day!

Thursday, February 25, 2010

Another day!

Asa was so happy this morning! I thought the Zantac must be working. I was wrong!!

At PT they wanted to shoot a short video of a child using some of the equipment that was bought with funds from last year's fundraiser. They thought Asa's therapy would work out well. I said it'd be fine with me but there was no telling what Asa would have in mind!! Well, shooting a video wasn't on his agenda!! LOL! He did Ok but he was grouchy and sensitive. He has done much better the last few therapies and I was hoping he'd shine today. It will only be a 2 minute long clip on a news interview so I'm sure he showed them enough but last week he was on fire!!

And at speech later....well, let's just say his therapist let him take a treat home with him! When we tried to take it away he'd just scream!! Here's the story....

He loves his home teachers clip board! I've tried to get him other clip boards but he has no interest in them!! JoBeth's is hot pink and has a storage area under the clip board. Seriously, this is what we lure Asa with sometimes, a pink clipboard!! So at speech I start telling how much he loves this clip board and Beth pulls out a red one she has and doesn't use. You'd have thought it was a million dollars to Asa!! It had paper in it and she got him some markers....man, he was in heaven! And really, if we just tried to move it he'd start screaming! Thankfully she let us have it! YAY!!

So I get the idea that an office store might have a small version that would be perfect for Asa. You know, something more his size! So we stop at the store. I get out the small stroller. I take the clipboard from Asa. He loudly lets me know that isn't in his plans!!! We run in the store, him screaming, nothing distracting him, and look for a small one! Guess what...they don't have them. Maybe there isn't such a thing, I don't know! We were in there just a few minutes and Asa's screamed and kicked his feet the whole time!!! I got him back to the car, in his seat and gave him the clipboard and he was fine!!! How (and why) does he love these so much!! My silly boy!

Oh and while at speech, he put the marker in his mouth! That's right, even though we beg him to eat in there each week, he won't! This week his decides to try a taste of marker. And we kinda let him!! Just a little. Just cause we want him to be oral. And they are non-toxic. The box says so! And it was a yellow one so when he drooled it back out, it was *that* noticeable!

Then he got sick at school. And it had nothing to do with the marker. Just when the feeds were going he started getting sick so I turned them off and plugged up a farrell bag. I hate this reflux. I started feeds when we got home and I could hold him and he could doze. He got sick after that too! I hate reflux. Did I say that already?!!

I had a meeting tonight at Cade's school. They are getting ready for state testing and really pushing the kids. They wanted to inform the parents and give us some tips. Guess how many parents came......2! Yep, 2 parents in all of the 3rd and 4th grades! And the meeting was very, very informative. Plus we won a scientific calculator for the kids! One of the tips was to do some extra work on the weekends and over spring break! HA! I feel like I'm drowning already! I know it is important and we'll try but I can't imagine putting in extra time while getting ready in the mornings or on the drive in the car! Maybe most peoples mornings are so they can run vocabulary but not here!! And car rides....this afternoon Cade held the puke cup under Asa all the way home. And, by the way, Cade is a squimish as Anna (and me)! I can barely juggle the balls I have in the air now! Thankfully, Cade is doing OK. All the kids make good grades. True, they could always do better though!

Juggle, Juggle!

2 comments:

gg said...: Reading Asa threw a fit over a clip board has me laughing out loud...the things these little ones love. With Bricen, it was a blow dryer; for months he wanted to carry it every where he went.; February 26, 2010 at 12:09 PM
Kim and Asa said...: And he loves his feeding tube extensions too. His PT came to find us in speech because Asa had left his toy tube in the PT gym! It can be scary to see him flinging it around and have to double check to see if it is play one or one that should be hooked up!!

So Bricen can bring his hair dryer and Asa will bring his clipboard and tubes! They'll have a blast!; February 26, 2010 at 1:51 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!