School fears

Another day has passed. I looked at the calendar today and was truly shocked to see that it is July 27. I seem to lose track of all time. It feels like my time is standing still, but yet the world continues to move on all around me. So once I saw the date, I counted forward to the start of school. 4 weeks. I had to stop and catch my breath. Normally, I look forward to school starting. I love a clean slate and new schedules, etc. But not this year. I am scared to death. I WANT Ally to go to school, of course. I just don't know if she has the stamina. I don't know if I have the stamina to get her there. It is not going to be easy. I told Jerad he better start blocking out some time in September. It is going to take one or both of us to get her there...and I mean possibly sitting with her through school. (get ready, Mrs Hamilton) We actually have a few friends who mentioned going to school with her too. Because, to be quite honest, I think she would do better for someone else. Less whiny and needy. There is also the germ factor. When her ANC is low, she is at high risk for picking up any germ/virus that flies by. But the doctors still feel that school is more important and that she should go. (I need to clarify this with them, exactly) I guess they think the experience of school and friends and learning far outweighs the risks of catching something. It is so important for these kids to still feel like kids and not like they are banished from society.

This week was Ally's favorite vacation bible school at Peace Lutheran (Mrs Booher's church). She has gone for the last five years! I am really sad that she is missing her sixth year. We used to wait all year for this week to come. She was actually signed up, and the volunteers said they would be very accomodating to her, but her ANC was only 300 on Friday. I thought it would be better to keep her home rather than risk another in-patient stay. But it is with a heavy heart that I let her brother go, and she stays home, yet again.

Speaking of her brother, he is starting Kindergarten! Normally, that would be a huge deal in our house and we would talk about it everyday etc. Oh, I have barely addressed it. I feel bad. I had a talk with him at bedtime tonight about getting on the school bus. He is not a shy one, not a scared one, so that is good. He'll be fine. But he could probably use a little more coaching from his Mommy. Today I worked with him for about an hour on his reading. He seems to be getting it, just the very beginning. If only I had more time.......I feel bad for the poor middle child, and especially now!

Ally was down a little more today. It seems the weekends are good and then she gets progressively worse. She wanted to go to the pool, but then she never got in. She did sit there for over two hours though, and that got us out. More nail painting. You can tell from this picture that Ally has been here. Lots of Ally's Army bracelets and even more nail polish:
Her belly is hurting. I think she maybe took in 200-300 calories today. She had lost another three pounds on Friday. Her weight is down a lot. I am scared if she doesn't start eating that we will be looking at IV nutrition. I do tell her this, but it makes no difference to her. She just doesn't want to eat. Period. I almost give up on her, but I know I shoudn't.

Thanks to all of you who still check the blog even though we are not in the midst of a medical crisis. I have many LOYAL followers and it is not necessarily the people that I would expect them to be. Some of them are people I have never met, but feel like they are truly my friend (Queen Bee). I tried to teach Carly about blogging tonight. I was showing her the pictures. So here she is... future blogger...Carly Barnett. (okay, she is actually looking at Sesame Street here, but we were reviewing the blog just prior to this)