Proof

So we've gotten rid of the Lamictal and Trileptal and now are fairly certain that sodium channel blockers are a no-go for Lily. She is down to having only a few seizures a week (for over three weeks now)!! Also, she is feeling much better from the double ear infection and yeast infection. She's making leaps and bounds with horseback riding, and we can see that she is getting stronger and really loves being on the horse. Because of help from family with the costs, we should be able to have her continue to ride this summer--something that I really believe will help her to walk!

All this said, when something happens that surprises me, it really has to blow me out of water because our roller coaster is quite steep and has intense ups and downs. So today, when Lily's teacher told us that Lily is doing so well with school and meeting so many of her goals that we need to rewrite the IEP, I was elated!! She is counting to 10. She can identify colors. She can identify her name...and more, but also really impressive is that she can count objects. This is ahead of what she would be expected to do at her age even if she didn't have tuberous sclerosis. This is shocking and it isn't as well. We've always known that she is smart; we can see it even though she doesn't talk and many things fall behind for her developmentally, we still knew that she could understand so much more than she could express. But to have proof of what we knew fills me with such hope and gives confirmation that when she laughs at our jokes and when she protests to a question that she really is understanding us and giving her opinion. She is absorbing her environment and giving us little glimpses of what it is to be Lily. But also, we know that Lily is learning all of this and finding a way to express it because she has an amazing teacher. Lily gets so excited to see her and is motivated to work with her! We love Ms. Sharon and will always be thankful for her working so hard to see that Lily has the best chance to do anything her little heart desires.