So as week start week seven of our second episode this year, here is what we are up to. We have disenrolled from traditional school and are trying an online school. Traditional school was not accepting nor willing to work with us. At this time I do not not have the ability nor the resources to exhaust trying to fight for something that should be a RIGHT!
The online school has been a bit of a challenge. A little stressful. It takes a bit of work to transfer and we are working out the kinks with the teachers individually. The school overall is very communicative. I look forward to reaching a level of normal with them. But I feel that overall it will work very well for us. They are extremely helpful and pleasant.
Our lives are revolving around finding our “normal” episode. Or trying to “control” it. The Anti-emetic seems to really play a factor in that. If we can get the headache pain lessened, we may just be able to roll through an episode pretty easily. Well, easy compared to the every other day trip for an IV stage we are in. His pain seems fairly constant. Not the bend over pain that I have seen on the forums at http://cvsaonline.org/message-board/ when people talk about pain. But then we are talking about an adolescent that has learned to live with a high level of pain. SO the pain scale seems to be fairly off with typical levels of pain. And I am afraid that with the reemergence of the day to day migraines that the pain scale has once again been knocked of kilter.
We are under discussion for the admission to the hospital for the treatment that he had once before that lasted for 7 months. Hoping to hear back soon.