Reilly is feeling very tired today and has been very attached to me. She says she doesn't feel well but can't put in to words what is not right. This scares me in more ways than I can adequately express. I'm terrified that she is going to bleed again and we won't know and will have to relive some of the experience of last month. I am hoping that she is simply having a day that is just not so great. Ms. Susan got her purple glitter nail polish AND painted her finger and toe nails, so she has been showing them off to anyone who will pay attention!
We go back for blood work on Wednesday, and have a clinic appointment next Tuesday.
This waiting and watching is very stressful and heartbreaking. She remains on a very restricted diet and on activity restrictions. It is very hard to tell a child (who appears outwardly very healthy and fine) and reasonably expect her to understand why she can't do things she has always done or eat things she has always eaten. My promise to her is that when the doctor says she can eat whatever she wants, we will get one of everything and she can have a feast! That works for now, so I will take what I can get!
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