Great Visits Today and Happy Birthday CARTER!

Today has been a very good day for Avarie. She was visited by some very wonderful people. Three of her nurses from Emanuel, her Childlife person from Emanuel and our Case Manager from Emanuel. Can I just say that I love Emanuel and all the people there. What amazing people to have seen my post yesterday that Avarie needed visitors and they all came running. We were so lucky to have ended up with the best medical care in the world when we ended up there. I am learning to like Doernbecher, but my heart is totally at Emanuel and always will be. They saved my baby's life more then once and not only that they truly love my daughter. I love them all so much for that, I love them too because they have all become such good friends to me and my family. Oh and not only did we get these visits today, about two weeks ago another one of Avarie's fav nurses from Emanuel came with her husband in tow and Avarie's Physcial Therapist made a special visit up here to her too. Can I just tell you what amazing people those Emanuel people are. Can you tell I love them, because if you couldn't let me just say it one more time, Emanuel Nurses and Dr's and entire Staff the Giles Family loves you all.
Turning my attention now to Avarie, which that is the part most of you probably care the most about not about my eternal love for Emanuel. She is doing great. Her rash kind of gets worse then gets better sometimes in just a matter of minutes or hours. Its odd, but I guess normal. It never bothers her so that is great. Really nothing is bothering her, except her new boots that she has to sleep with at night. It took her almost 2 hours last night to go to sleep, they're actually really soft and padded on the inside, but they're big and clunky. She has to sleep in them to try to stretch out her hamstrings so that when she tries to walk she's not walking on her toes. Although I suspect she would gladly walk on her toes the rest of her life if she could, she thinks she looks like a ballerina when she does it. She went to sleep better to night so thats good.
Her counts are still a bit of a mystery. I tried to get the Dr to speculate today on them, but he said too much speculation hurts your head, I explained not knowing and not having any ideas hurts my head. He thought I was funny, I thought he was annoying. Oh well! I realized I wasn't going to get any answers, so I am left to wait. Although I am feeling much more postive about it all. The rash continuing definitely gives us hope. I can't imagine any other situation where someone would actually get excited over a rash and really there just aren't any other situations, but this rash has me hopeful and mildly excited. I promise to not get to excited over something attacking my child.
Thanks to all of you who continue to support us emotionally and physcially with meals and finances. I hate even admitting that we are getting help with that, its a pride thing, but we are amazed and grateful for everything.
One last thing, Happy Birthday today to my sweet little, excuse me, BIG man CARTER!!!! He is 7 yeas old today and mommy didn't even get to see him. But Daddy took him and two friends to Wunderland and he had his friends stay the night. I think he was OK with it all, we'll have a big family party for him this next week.