Wednesday, July 21, 2010

Day 3

We are in Ronald McDonald House! It's so weird, but even though I have never been to this one, it feels a little like I am home. I am sure part of it is the familiarity, but it's just so nice be around people going through similar things. For the first Time in three days, people are talking to me like I am a person, smiling & chatting, not just staring and giving me pity looks. Volunteers and parents with a free hand jumping to help, not to mention a real home cooked ham dinner. Cloey is happy too, she loves it here & of course everybody immediately loves her.

The kids make "all about me" posters to hang on the room doors with pictures and everything. Cloey was glad to see all the pictures of kids with trachs since this is the leading trach & airway hospital. Then She saw a baby with tubes all over and she said "look mom just like I did" yes Cloey, you sure "did".....

Cloey had an EEG placed today. It is wires glued all over her head with a little computer in a back pack. The neurologist wants to rule out seizure activity that could be interrupting her sleep patterns and therefore causing dependency & fatigue. We still have tests to do through the end of the week and into Mon next week. The doctors have an idea of what is going on and are basically trying to eliminate all other possibilities, unfortunately if it's what they are thinking it is, it's not good. please bare with me, it is very complicated and since we don't really know yet, I am not going to go into it now. Just know that our hearts are very heavy and we have spent a lot of time talking and a lot of time on our knees.

I want to end on a good note so I will tell you what we are doing tomorrow, Cincinnati has one of the nations top zoo's and Ronald McDonald has free tickets! Cloey will be done at the hospital by about one and then we will head over. Giraffe is favorite and she is excited. Thanks to everyone for all the well wishes!

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