We escaped

Josie was officially sprung from CHLA today. At about midnight last night she was about to discharge herself. She did a really great job and absolutely hit the last night. After the fire alarm went off 4 different times with a code red for a half an hour each time from midnight until 4:30 AM, we were both done and ready to leave. We had and met some of the best nurses there yet. The nurses on that floor go above and beyond. It is a strange floor in the sense that not a lot of parents visit or are involved which I find to be incredibly sad. One little 12 year old darling friend, Kindra in the room next to us was there for the 4 days we were and her parents never came. The saddest part is that her brother was inpatient too, but they couldn't be together because of isolation. She was even taken in and out of surgery without the support of anyone. The nurses really step it up to love these kids and I think that is why it is such a special and unique floor.

Tonight was the Girl Scout campout at Paradise Canyon. It wasn't looking good for our participation for a while because they weren't talking about discharging us. All of a sudden we heard the nurse announce in the hallway that she got discharge orders for Josie Hull. Well Josie heard her as well and let out the biggest scream. A couple people came running only to find out that it was a happy scream. I had to thoroughly bath her and scrub her hair. They had to use this stuff that is like thick sticky toothpaste to get the leads to stick and stay on. What a complete mess to get out. Thanks to Janice Shue for watching the rest of the troop until we got there. We pulled it together and all had such a great time. The girls did their cheers with their pom poms and were adorable. I love our great little troop.

So I wish I was going to be able to give you a complete report on all the great new things we are going to do with Josie's seizures, but I'm not. There will be much deliberation in deciding the best route. What we have clearly learned is that the ones (which are most of the meds) have significant cognitive side effects that she reacts VERY poorly to. You can already tell a difference from the deletion from Topomax less then 2 days ago. She already has a quicker recall. Not normal, but better. Let the true exploring begin.

I hope everyone has had a great week and looking forward to a lovely weekend. We are! Jenny and Josie