EEG Results are in...

I will start with the good news…

Cole saw the ophthalmologist this week and although it was a disaster of an appointment, Dr. Jeffries said Cole's eyes have remained stable since our last dilation so his prescription does not need to change.  Unfortunately he refused to do the vision test and it was heart breaking watching him try to identify the shapes and continue to call them the wrong names even when we moved him halfway to the screen.  All things considered, however, we are very happy to hear that his eyes are staying the same.  We will go back in 6 months for another check-up.

Regarding the EEG, I finally got a call back from Dr. Lavenstein today and unfortunately he said there is still quite a bit of abnormal activity on the EEG.  Although I wasn't surprised, it was still extremely discouraging since we were hoping it would be "clean".  It has been two years since she had a seizure and I was really hoping the "quiet time" would stop the rioting and we'd be able to start weaning her off her medication.  The neuro said we should continue at the current level of her Trileptol and increase it to 1 tsp when she reaches 40 pounds (in the next few months).  We will go back in 6 months for a check-up and do another EEG next year to see if she has made any progress.

I remember growing up there was a boy on our street who had seizures.  I remember thinking they weren't really a big deal.  You have one, it stops, and you go on with what you were doing.  Boy was I wrong…or perhaps just wrong from a parent's perspective.  We've been told they don't hurt or cause development issues, so why are we so bothered by them?  Why?  I will share a few of the things that occupy my thoughts.  I worry she's going to be on playground equipment and have a seizure and fall.  I worry she's going to be on a school trip and they will forget to give her medicine or it's going to get too hot and not work (extreme temperatures change the compound).   I worry she's going to be in 7th grade history class, have a seizure, pee in her pants and all the kids will laugh.  I worry that she will only be able to live where public transportation can take her to get groceries and go to work because she won't be able to drive a car.  I worry that she will want to have children but not be able to take her medication while she is pregnant.  It's not really the seizures, but rather how it impacts her life.

So many times we've been told to be thankful.  We've been told that "things could be so much worse."  We were told to be thankful that her displasia was operable or her prognosis would have been bleak.  We were told that her hand could have been just a "helper hand" but look at how well it's functioning now.

Knowing this and reading so many blogs where parents struggle just to find a medicine regimen that controls the seizures I feel selfish wanting her to be seizure free.  I feel guilty for being angry.  I feel guilty for wanting her to play like her friends and not have to answer questions about why she wears a brace.  I feel guilty that I want her to not have to worry about so many grown up issues at such a young age.  I hate that I can't FIX this for her.  And yes, I know this experience will make her stronger…but all things being considered I would still trade it all in.  I know over time we will move on and accept where we are but I'm just tired of the roller coaster.

And with that, life continues…Monday we go back to the orthotist because Reagan got a HORRIBLE blister on her big toe from her brace after two hours of soccer at the playground Thursday.  We have her 5 year appointment and go back to see the physiologist in May and then a little over a month off before we head back to UVA at the end of July.  If we're lucky I'll have some fun pictures from summer trips to share.  As always, thank you for your ongoing prayers, for caring enough to read my blog, for keeping up with our adventures and for all your support!