Lily had her blood test done today for the canavan test. 2-4 weeks till we get the results (as something tells me it will be more like 4 weeks with our luck) and her glasses are ready for pick up.

Got the letter of approval from BCMH and the script is waiting at the Dr's to pick up to get the testing done. So tomorrow we will get the test done tomorrow and the waiting game will begin again. But hey at least we are that much closer to getting some kind of answer. I am very optimistic that it will not be the answer they are expecting.

Still waiting to hear back from 4 paws. I am trying to patient! lol It's not easy. They said it will take 2-3 weeks to get approval and it's been 2 and 1/2. I wanna get the fund raising done so we can get Lily her seizure alert dog. Just the thought of having some kind of warning system in place is amazing! I think we would all manage a lot better if we had more eyes, ears, etc helping us keep an eye on her for seizures. Can't wait!

Yippie!

Two small victories to report! First Lily had a physical therapy evaluation this past week. She is right where she should be! Yay.

The second victory....her neuro wanted her to see an eye doctor because children with canavan normally have some kind of nerve damage to their optic nerve. Lily's optic nerve is in perfect condition!v YAY YAYAYAYAYAYAY! lol He does want to see her back again in 6 months to check it again but this is really good news. However she does have astigmatism and has to get glasses. But hey that is ok.

So

So far so good. No more seizures at this point in time. Lily had an appointment with her neuro yesterday. It went ok. She feels as I do that Lily had the two break through seizures due to the cold coming on that she has now. She feels that we are at a good level with the Keppra, but there is room to go up if we need to (and hopefully we won't need to!). She also said it was ok for us to try the diastat at the 3 minute mark instead of waiting the full 5 minutes. My personal theory is that the diastat hasn't worked because she is too far into the seizure to be pulled out by it. The Dr's concern is that Lily will build up a tolerance if it is used to soon and then it won't work. Um it really hasn't work so far so what's the diff? Out of three times it has worked one time. And that one time was the time that Tracy and CJ were with her alone and Tracy gave it to her as soon as he got it into his hands (about the 2 minute mark). I can't imagine there isn't something to that.

We also received notification that she has been approved for the BCMH for the canavan testing. Now its just a waiting game to get the letter so we can actually go get the test done. Hurry, hurry! We have been waiting since June and I really want to get this over with. Now I just have to wonder how long it is going to take to get the results back. Bet it will be a few months or longer! Ahhhh! lol


We should be hearing back from 4 paws for abilities this week or next. I am very anxious to get the approval so we can start the fund raising. The thought of having some kind of warning system in place to let us know that Lily is going to have a seizure is just like a dream come true. Ready to get moving on this.

And I am going to get Lily into dance or something. I would really like for her to take baton but I worry about the baton coming down on her head. I took baton when I was a child and you cannot avoid get thumped in the head with it a time or two (or more! lol). Maybe we will look into tap or something. Maybe I'll call her neuro and see what she thinks.

That's it for now. Thanks for reading!

Update

Sorry this has been so long in coming. I needed to get my head on straight and get out of my funk. Lily is home from the hospital and almost back to 100% which is just amazing considering what she went through.

At this point in time I am not going to post details of Saturday because I have to file a complaint against a Canton hospital. Once it is resolved then I will share what happened. I will however take this time to thank Akron Children's Hospital, the staff and Dr. Holler. They saved Lily's life and my sanity.