Catching Up

Wow, I have a lot of catching up to do on here. We have been busy busy. The Poker Run Spaghetti Dinner back in march was very successful. Thanks to everyone that participated.  We met a gentleman there that has turned our sights to a new medicine for Julia. It is called Cyclodextrin, we have been waiting on the NIH in Md to get a trial of this medicine going. We are now considering going to the FDA individually & applying to have her new doctor @ Shands treat her with it. The only problem with that approach is we don't know how much insurance will cover because it is investigational. Other families have gotten the FDA to approve the treatments but not insurance, so they are having to pay out of pocket to the tune of around $30,000 a year. I'm not counting my chickens here just yet. At least we have a couple of different paths before us though rather than a wall. Even though some days I don't see the difference with the slow speed that everything moves. I know everyone is working hard on their end, it's just frustrating. Julia continues to do well, she is loving summer. We took her camping last weekend, she loves it! We have a little pop up camper & she enjoyed every minute. Another positive note is that her body seems to have adjusted to the Zavesca & we haven't had to use the pull-ups in several months now. That is a blessing all in itself. Ok, I must go for now, but I pledge to get on here & update more often in the future :)