Celebrating Inchstones: Terrific Tuesday

Tuesday, July 20, 2010

Terrific Tuesday

Asa had OT today. I don't go back to the therapy room anymore and this may be the most wonderful 45 minutes of my week! I usually take a book into the waiting room and read. I'm ready "Crazy Love" by Francis Chan right now. I'm only on chapter 4 but so far I love it! There was a time I could read a huge book in just a few days but I find myself rereading the same sentence over and over now.

Asa has been playing with oatmeal in OT. Dry and wet oatmeal. He doesn't have to eat it but the goal is to play with it and touch it. To become one with the oatmeal. It is funny how a little thing like oatmeal can cause such resistance. Lately Asa has come out of therapy smelling like pancakes, as in maple syrup and brown sugar oatmeal. That is my favorite flavor and I love sniffing of Asa the rest of the day. He comes out smelling much better than when I send him in!!!

Asa has a 24 hour EEG at Vandy this week. It was scheduled for Friday but they called this morning and they have a bed available on Thursday so we took it! This test is really an easy test. They will attach leads to Asa's head and then monitor him for seizure activity. Just a reminder, Dr. K and his GI think he may be having startle seizures and his neuro has called them autonomic dysfunction. This will show us positively whether it is seizures or not. The test is not painful other than the time it takes to place the electrodes on his head and then spending the duration of the test hooked up and in a hospital room with people watching via camera and coming in the room. For you or I it would be easy-peasy. For a kid like Asa, with sensory issues, it can be a nightmare! He won't like being at the hospital (believe me he can tell) or being hooked up or having to stayed hooked up for at least 24 hours. In an odd way this will work to my benefit. My job is to startle him into an "episode" so the technicians can measure what is going on in the brain during an event. But I have no desire to spend at least 24 hours with him in constant episode mode. He is a hand full when he is in a episode. Scratch that, he is 2 arms full and then some! Nor do I like the idea of freaking him out so much that he pukes and zonks out. I've spent the last year trying to predict these episodes and prevent them from happening! But you do what you gotta do. Cade has been giving me tips on how to freak him out! Nerf gun, fan, wrestling, the list goes on...Cade is good at his job!

It just so happens that I pulled out a brochure on the EEG testing the last time we had a neuro appt. I was cracking up laughing while reviewing it tonight. First of all there are 5 pictures of happy, smiling kids on it. Only one of them is hooked up and I dare say it was only for photo purposes! Seriously there are like 6 leads on his head! And they throw in a pic of a technician too. For most of the test there are no special instructions with the exception of sleep deprived EEG but that is self explanatory if you ask me. Another special instruction for many of the test is "do not allow your child to consume any caffeine after midnight"! Really, who lets their child have caffeine after midnight! Who is even awake after midnight?! I'm trying to find the humor in all things!!!

There was a time the very thought of seizures was terrifying to me. Lots of mito kids have them so it seems likely that we'd cross that bridge but it really scared me. Now that someone has said the words out loud, the fear is somehow gone. Maybe I've walked this road long enough to know that you deal with what you've got and go on living. Maybe it is because I've seen many kids diagnosed and watched and learned as the families have adjusted. Maybe it is because I really believe Asa's issues to be autonomic. All of the above is likely to be true but what is even more true is that I have peace that passes all understanding. I have a peace and assurance that I'm not alone on this test and journey. Now come Thursday at 1pm, I maybe clinging to these words and promises as much as Asa will be clinging to me but I have faith that we will deal with the outcome in the same way we have dealt with a mito diagnosis and a feeding tube and all the other stuff that comes our way. My God will have nothing less from me than my reliance on Him and His wisdom and plans!

2 comments:

Unknown said...: Kim,

You absolutely should have peace and assurance....GOD has already given that to you :)

....and, HIS grace will sustain both of you throughout the process.

I am going to keep you lifted in prayer (especially at 1pm)....; July 21, 2010 at 5:50 PM
marie clare said...: Good luck tomorrow, praying it goes smoothly and you get some answers.; July 22, 2010 at 12:59 AM

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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!