Tuesday update--Emery

Hi, everyone. Just wanted to post a little update on Emery. She had a really good night last night; Rosanne and I stayed till 2 AM and got to hold her and rock her during and after her chemo. She was content to sleep while one of us held her. She seemed really peaceful and I could swear her eye looked like it opened more. Funny, David and Rosanne independently said the very same thing this morning. So maybe the pressure is easing up a bit and she is getting more ability to move her eyelid. Or maybe it's wishful thinking. :) Bonnie came back down at 2 AM to feed Emery and take over her shift so Rosanne and I went to our hotel and finally got to sleep about 3. We had to wait a little while for a taxi to get us there. You should have seen the LOBBY of the hospital when we left--PACKED with people waiting to get into the ER. I could not get over it. And they all had sick kids, obviously, since it's a children's hospital. I felt so bad for that many people sitting up all night in the lobby. One of the staff today told us that it was an 8 hour wait.

Emery had a fairly peaceful day. They did some sort of kidney test but we don't know the results yet. Still don't know the bone marrow results either. But the doctors basically said that, regardless, the treatment would continue as planned.

I am sitting in the PICU waiting room, which has become our second home lately. Sometimes it's really full of people and sometimes it's fairly empty, which is the case right now. There are about 20 recliners around the perimeter of the room where family members and friends can sit or lie down and sleep. Yes, many people end up spending the night in here, which would not be my first choice but it would certainly be a blessing if we had nowhere else to go. There's a Ronald McDonald House on the 4th floor of the hospital but you have to sign up for a chance for a room every day and there are not enough rooms to go around. Not everyone can afford a hotel and maybe some people just want to be right here close by if they are needed. We have a little kitchen, a couple of TVs and tables and chairs. Some of us are literally "camping out" with all of our belongings, snacks, water, etc. Bonnie and David have been fortunate to get into the Ronald McDonald House the last few nights but you only get one night at a time so have to move all of your stuff out every morning. Then you sign up again and hope you get picked and move back in again. Not the most convenient thing but probably the most fair. Once everyone is out of the rooms at 11 AM, they clean everything up and you can sign up to go back into one of the rooms for a nap or a shower. The kids have taken advantage of that opportunity, too. We were told that Rosanne and I might be able to get into the off site Ronald McDonald House for $25 a night so we are waiting to talk with a social worker about that. I am interested to see how the social workers do things here since I used to have a semi-related job. As you can imagine, I have lots of questions. :)

Okay, sorry for the delays but I have been working on this all day and every time I think I am ready to post, someone else comes to see us. We did meet with the social worker, who was VERY nice (yay social workers) and helped us apply for the Ronald McDonald House. Unfortunately, there were no rooms tonight but we will go on a waiting list and start calling every morning till we get in. The good thing about this off-site house is that once we're in, we can stay up to 45 days. None of this in-and-out-every-day thing that the kids are having to do. So we hope we get in soon!