Monday, July 27, 2009

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)


  1. School fears happen to all of us...including myself when I was a child :-). Ally is going to have to take baby steps. The good thing is she has so many people willing to help her get to a comfortable place at school. All of us, all of the great people at Valley, she will be well taken care of.
    You know if you and I have anything to do with it, Miss Carly will most definitely be a blogger!

  2. Queen Bee here . . . I am so glad you feel as though we are friends. I feel the same and am truly blessed to have found you (or did you find me?). As I have shared with you before, visits to your blog begin and end each day for me and I am always thinking about you as I am with my own children. Today my eldest had pink eye, a cold and he lost his first tooth. To say he was cranky is such a gross understatement, but through my frustration I remembered you and your quiet, constant patience. You have taught all of the Army how to love, trust, be vulnerable and more. . . Thank you (again) for allowing us into your daily life.


  3. Valley is such a wonderful school. They will find a path with you that will work for Ally. Maybe it won't be quite full time. Maybe you don't have to get her there at o'dark thirty, but later would be okay.

    Has Ally stopped vomiting, I hope?

  4. Please keep blogging - I read your blog every day, checking it before going to bed or first thing in the morning. Each night and every morning I am spending time praying for Ally and for your family. Although I don't know you personally, your lives have touched mine and so many others immensly. A small group of ladies are planning to be part of the walk on Oct. 1st..because we care about Ally and your family. Looking forward to more details about this wonderful event. Blessings to you - you are a great a great family!

  5. Thank you for faithfully writing in your blog. I am a cousin of Lisa Bauer (from Ohio). After reading updates about her dad on her blog, I always read your blog. I am amazed at your determination to have as normal life as possible. You do so much for your children and you will be rewarded.

    Take care of yourself and I'll be praying for Ally, you and your family.

    Tina & Kids

  6. Thank you for updating so faithfully! I check every morning, and say to myself I have to check on my Ally. Even though I have never met you or her, she's constantly in my thoughts and prayers.

  7. I agree, I look forward to checking in on the Barnetts everyday (along with the Bauer/Beech crew) and always pray for better news and happy days. Looks like they got the All for Ally bracelets, Lisa was just asking me about those last week. Your blog makes me cry and lifts me up,reminds me of good times together and inspires me to appreciate the every day goodness in life. LOVE to you all, and keep blogging!

  8. I understand completely how you feel about the eating situation. It is a huge chore in this household as well to get Maggie to eat. I guess it is to be expected given everything that is being put into their system, but never-the-less, quite frustrating as we continue to watch the dwindle.

    We continue to look at the blog daily and though we've only talked a few times, I hope you might feel some support from those that are in the trenches right along side you.

  9. I look forward to Ally's blog every morning. You have a huge crew of old & new friends in all of this & I hope you find some comfort in that. The little things, little signs-like the bird at Carly's party, are encouraging to all of us, so I thank you. Your ability to articulate your family life stories is a wondeful gift. My kids ask about Ally often. I look toward Fridays in a whole different way now. ~Kim

  10. Janel, would she eat those ensure shakes? they have a million calories in them, and taste like milkshakes...i don't know. just an idea. I can't believe it is August either, and I don't have school to get ready for. I'm sure Evan will be fine. Just the fact that you recognize that you aren't spending as much time with him as you wish means you are doing a great job. I am getting a fantastic lesson on parenting with every keep it up. I wish I could go to the pool with you guys- one of these days.....