New Things

MRI results showed no change so no growth either. Yay! Boring medical results are good, but I really did want to see the tumors get recognizably smaller. We still know that her development is better than it has ever been on afinitor, so even if the MRI doesn't see a change, we do. In fact, in Dr. Sotero's office, Scott handed Lily her Woody toy and she grabbed the string on his back and pulled it over and over to hear him talk (this was the first time she'd done this without us helping her do it). It must be the universe's way of reminding me that we are seeing a change!

So after the removal of the Trileptal, Lily started this wacky screaming/growling behavior that had us concerned that she was ill. After having her checked by doctors and having a few therapists watch the behavior, we have learned that it is behavioral. She throws a tantrum! She's thrown tantrums in other ways before, but we would actually lose it...it's a good thing that she throws a tantrum because we know that she's really with us and making a concerted effort to control her environment. So we're just ignoring it if we know her needs have been met or redirecting her to communicate with the ipad if there is a high likelihood that she is hungry etc. so that she has another way to express her need. So far so good!

Seizures are at 1-3 a day and lasting about 30 seconds, some of them are clinically strong and others are hard to spot. We want to start her on Banzel (a new seizure medication) but our co-pay is $400 a month so we've applied for patient assistance and hope to get an answer soon. We're also trying to get assistance with Clobazam (Onfi) because our co-pay is $1000 a month and driving to Canada for it at $100 a month is still risky since they can confiscate it and you can only bring back 3 months at a time without risk of prosecution and possible jail time. It would be so much easier if we could get it here in the Good Ol' U.S. of A.

Horseback riding still going really well! In fact, we go tomorrow and I can't wait. It does, however, seem to make Lily really sore--my mom reminded me that you have to get sore to get stronger, but it's hard for us (even grandma!) to see her have any more struggles than she already has, but we just have to hope that the fight we put forward now will result in less later. Plus we've already seen results and Lily loves it so we all get really excited when it's time to head to Woodinville!!