The last post I wrote was about the scary new thing in our life: seizures. After the last few weeks, I’m ready for the scary new thing in our life to be spiders, broccoli, or clowns in my closet.
We saw our newest doctor and Jake’s pediatric neurologist on Friday. She confirmed that the episode he had last month was indeed a seizure.
She suspects that Jake has epilepsy, but since he hasn’t had another major seizure like that one, we can’t confirm that. She totally believes me when I say that I still see him space out in ways that would indicate “absent seizures”, which are seizures where the individual doesn’t lose control of their body, but looks totally spaced out. The difference between a seizure and spacing out (before you self-diagnose yourself and all your co-workers with seizures) is that a person in an absent seizure won’t respond to most kinds of stimulus.
The good news, so far, is that she doesn’t suspect that Jake has any worse kinds of medical problems like a brain tumor or something fun like that.
We will be doing both an EEG, which measures brain waves, and an MRI which takes a picture of the brain. I will be very happy to see film with nothing else in Jacob’s head besides his funny little brain.
Neither of those tests are scheduled yet and the scheduling team warned me that they are booked pretty solidly up to the end of the year. I’m taking a deep breath before I politely and firmly tell them to free up some time for us. We are on the top of both waiting lists right now!
Jake is continuing to feel pretty crappy. His head hurts him almost daily. The other night, he was hurting and told me that he wasn’t ever going to get better and that he was scared. So far, with all of his problems, Jake has been pretty unaware of what is going on. He knows that therapy isn’t fun, that working on muscle tone really stinks, and that sometimes he has a hard time sitting still, but he hasn’t really understood that those things happen because something is different about his body. The headaches are pretty concrete for him and it’s been hard for me to watch.
Since Jake is a tremendously smart little kid, he has also figured out that headaches upset me and that if he says he has one, he will most likely get out of whatever activity he doesn’t want to do. I’m trying to walk that fine line between letting him get away with skipping school or prolonging bedtime because he doesn’t “feel good”.
I’m still worried about him. While I’m not letting my fear take hold of me and rule my life, I finally realized that I was so exhausted every day after school because I was so horribly tense until I saw his little face and yellow hood after school. Once I got him in my arms, my body would let go and I spend most afternoons pretty wiped out. That is getting a little better, but it is probably going to be a constant for a while.
Things are still very tough at Jake’s school. I didn’t write about this because I was trying to figure out what and how to say it when he had his seizure. The short story is that we all agreed that I would stay with Jake until we get the help he needs in the classroom. Very suddenly, the school decided that a sweeping policy change was going to be made to exclude parents from doing the job that the school should be doing. Which forced me out of the classroom much sooner than I wanted. While I agree, on some level with that statement, they are not communicating with me and I am not confident that they are following through on what needs to happen. I need to know if Jake has a headache, if he starts to act strangely they are supposed to let me know, and he isn’t allowed on any playground equipment. I’m getting conflicting stories from parents, volunteers, and staff about how Jake is doing and I seem to be shut out of the process.
Let me qualify the above paragraph a bit. If there was a reason that I knew for sure that I needed to be with Jake at school (like I did for a few days after his seizure) there aren’t bears or tarantulas that could keep me from telling the school, politely, to “shove it” and be with him. Just in case you were wondering.
I am absolutely NOT okay with this. The school has shot themselves in the foot by shutting a parent out who would do anything to help her child. They are more qualified in some aspects of Jake’s education than I am, but that does not mean that they know him better than I do. I am going to begin working with a family of special needs advocacy group in Stockton to help me get figured out what is the legal and respectful way of insisting that remain part of the plan for him.
If you pray and want to pray for our family, we could use prayers for peace, wisdom, for me to navigate the school system well, and for finances as the bills are starting to roll in for the procedures. We will be okay, but I need hospitals to be understanding of a payment plan, rather than thousands of dollars of payments all at the same time.
So, that’s it for now. I feel like my voice is a little lost right now. I’m tired. I’m sure you can understand if this doesn’t feel “me-sh”.
But, hey! It’s three degrees and snowing in Colorado Springs right now. It’s 60 and sunny where I’m sitting. That is a very good thing!