Well, after hearing that the Ganaxolone study won't be at CHOS until July, it dawned on me that Lily might age out of the study before it even gets going up here (the age limit is 2, & her 2nd birhtday is July 8).
So, last week we started scrambling to get Lily into a study elsewhere. After much consideration, we decided to go to Los Angeles & get Lily in the study at Children's Hospital Los Angeles.
Our original plan was to leave on June 16, however the coordinator called this afternoon & they've changed their dates & want us there on TUESDAY. AKK! So we're leaving THIS Saturday (6/9, yes in three days!) for a month in Sunny Southern California!!!
Lily will have three hospital admissions; the first will be for three nights beginning on 6/12, the second for three nights on 6/19, and the third for one night on 7/2. We'll leave to come home on 7/4 or 7/5.
We'll be staying in short term housing in a 2 bedroom apartment a few miles from the hospital. We're driving down so that we'll have our own car (renting a car is expensive!). Todd will be with us for the first and last weeks, and we're working on who will be with me the 2nd week. The 3rd week we don't have any clinic visits/admissions so I could be alone if we can't find anyone else, but we're working on a few other options for some help for at least a few days.
We're so, so grateful to have this opportunity to get a medication for Lily that will hopefully be a really good fit for her. I have to say, my hopes are somewhat high that it will work for her. Of course, all those parents of IS kids know that "high hopes" is a relative term; getting hopes up too high doesn't ever really happen.
Wow. So much to do in the next 72 hours!!!
PS -- Lily's DAFO's will be here on Thursday when our PT comes!! I really think having some AFO's will help Lily's walking IMMENSELY!!
No comments:
Post a Comment