Still Moving Ahead

We are A NIH right now for our 25th consecutive monthly visit. Crazy! What's even crazier is that this could possibly be our last visit for awhile. They are working on Phase 2 of the trial & when it gets up & running we will be going to Gainesville for the medicine & only coming to NIH yearly! Julia continues to do well, she had her first dose of 1200mg on Tues. She only had a slight affect on her hearing, & we are hopeful that it will bounce back. She is still in school full time when we are home & loves school! She's in the 10th grade & got A/B honor roll on her first progress report of the year. The picture above is of her most recent fishing trip with her Daddy & friends. The last time the guys went out without her they didn't catch anything & they told her daddy they wouldn't go again without her. I guess she really is their good luck charm because they had a good day with her on the boat :)

Trial Update

It's been awhile since I posted an update on the trial. Things have been going fairly good. Julia has slowly moved up in her dosages over the last 6 months. She is currently @ 900 mg a month. When she reached 600mg she had a small shift in her hearing that recovered slightly & again @ 900mg she had another shift & a small amount of recovery during the month following. Other than the hearing there has been really no changes either good or bad. We fly up again tomorrow for our March visit. I will try to do another update following this visit.

Thank You

Have to say a huge THANK YOU to Mr. Bob Hampton @ Bi-Lo sales. Mr. Hampton assembled a small army of people that pooled their money to buy Julia's pig @ the Youth Fair. Below is link to an article our local paper ran about the purchase of Julia's pig. We appreciate each & every person that worked together with Mr. Hampton to make the purchase happen. The money raised goes a long way in helping pay for Julia's medical bills.

http://www.ocala.com/article/20150303/ARTICLES/150309923