Monday, March 6, 2017


It's Monday afternoon and I'm sitting in one of those comfort places of mine.  A place that I see friendly familiar faces, occasionally a friend or two, and the faces of parents who don't have to talk but I can read their thoughts as they hold their phones with the hand sporting the bright orange bracelet.  I'm sitting in a comfortable red chair, facing the wall with the dancing flowers and Phoenix Childrens Hospital hands that our three year old loves to jump on as they flash across the floor, and next to the Starbucks where the barista asks where I have been if she has not seen us in a week.  We have nowhere to rush to and Sonzee is asleep (contemplating having a seizure; I can feel one on the horizon) and so I'll sit  here with my coffee and oatmeal and write.

The seizures unfortunately haven't gotten any better.  I was not expecting them to, so it isn't a disappointment.  I'm not even upset that for the past week we have been in "new medication choice limbo".  Sonzee's epileptologist gave us three choices (she is so sweet) and we ultimately get to make the decision.  I often chuckle about the fact that our choice is which antiepileptic drug we try next.  It is just so comical that this is actually a choice we are faced with every 6 months or so.  So naturally for over a week we have played the "which side effects are the least atrocious" game, we actually came to a decision in what I consider record time, and we have chosen Zonisamide.

She is still being weaned (because we take things extra slow with her) from Gabapentin, a failed drug for her that we were using for pain.  Now we will start to wean Sabril.  There is no reason to expose her to the potential retinal and vision damage if it isn't helping as much as it used to.  Her seizures have changed and so Sabril is no longer effective.  We are going to wean her extra slowly just in case we need to keep her on a low dose if it is keeping the spasms away and her background clear.  I am unsure what to think about the changes.  I have the butterfly feeling in my gut, but not the fear I have had in the past.  I wonder if I am actually getting used to parts of this life.  I don't know which way things will go, but it will either be a disaster or another (temporary) miracle.  I know better than to create any type of expectation, so I'll just ride this one out.

We leave tomorrow for Colorado.  We will meet with a bunch of doctors, but I'm really only concerned with the GI doctor's opinion.  I am looking for a lot of answers and I know if he doesn't have them, the odds of someone else having them are extremely slim.  I don't want to get my hopes up, but I think that's too late.  I know this visit will be greatly different than the one we had when Sonzee was 4 months old.  They won't tell us they haven't seen her skills in other children with CDKL5 and they won't say that she is doing fantastic for a child with a CDKL5 mutation.  Sam and I will most likely look at the other children there and wonder why her progress hasn't been the same.  We will say it's because of everything she has been through, but it won't make it better because still I wonder why it had to be her.  An answer I am guaranteed never to know.

So for now I will just sit in this chair that has turned into a comfort spot, drink my coffee, and smile at the fact that while writing this post I ran into a friend and made a new one and consider the fact that sometimes it isn't about the answers, it is just about where the experiences on the path to potential answers takes you.

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