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!


Marsha said...


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)....

marie clare said...

Good luck tomorrow, praying it goes smoothly and you get some answers.