For 7 years Lily has been on Sabril. She was on it before it was called Sabril. We used to call it Vigabitrine. We used to have to get it from a Canadian pharmacy, it wasn't FDA approved for many years.
Now that it is legal here it is cheaper for us to get (ie insurance covers it) BUT the process to get it is exhausting. Eye Dr. every three months and if you miss that appointment you don't get your meds. Even if you missed the appointment because you had a funeral to attend in another state and the Dr is so busy it takes you three months to make up for that missed appointment... you still don't get you meds. And your child almost ends up in the hospital for going cold turkey off the med ... you don't get the med til you see the eye doctor. And we have been seeing this same doctor for probably close to 8 year now. He is wonderful and thorough and I have sent every friend his way (well that needs to see a pediatric ophthalmologist duh). And trust him with Lily's eyes as I have never trusted anyone else. And yes we have seen a few other doctors regarding her eyes. He is the best. Today was another one of these gotta do appointments. One of those you spend over an hour there, she gets dilated and you watch your son play with every single toy in the place. And your phone. And your shoe laces. Ha like I wear shoes with laces. I live in Arizona. But he would have I am sure. But my point is it is a pain. An appointment that is just an obligation.
But today was different. Lily passed out because she had a huge tonic clonic right before she saw the doctor, but they were still able to dilate her eyes and he checked her with his bright light and special little magnifying glass just like always... but today he said... "she is showing damage" What???? He says it is minimal but if it is worse in 3 months she has to come off the medication. The one medication that I had ever seen any real positive results in. For real???
Lily needs what eye sight she has. She can't keep taking this med if she has damage. She is showing damage. This blows.
All I can do is pray. And whatever will be, will be.
If she needs to get off the med I pray for a good escape route.
This road we travel is bumpy and unpredictable. It's messy and frustrating.
But at least we know this is the road we are on, we know we are heading in the right direction and we know God is leading the way. The rest I guess we just put on our seat belts and see where it takes us.
Pray for Lily, for her eyes, for her seizures, and maybe for her mama.
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