So much to update; more facts than anything else right now as I am updating mostly so that those who pray can know specific things to pray for....

Happy news first- Today the girls were able to go to their new middle school and get everything done that was scheduled to happen on Thursday. Yearbook photo was taken, school id, uniform pieces purchased, books now in their possession.... super productive. My good friends Liz and Lynn helped me make going today rather than Thursday (the 6th graders' assigned day) possible and I am very grateful! Liz and Kate feel more prepared for starting school and Liz was so cute as she wore her school id around her neck all day. We just want Liz to be able to do normal, planned things and her hospitalization was going to get in the way of this, so it is wonderful that we were able to allow her to have today.

Liz's pediatrician (the GREAT Dr. L.) called me today and plans have changed a bit. She and Liz's GI doc have decided that it is time for the G-tube to be placed. Both of them have been trying just as hard as I have not to have to go ahead with the G-tube, but they say it is time. For multiple reasons, we didn't rush Liz in to be admitted today, and we are trying to work out details. We all feel a time crunch though as school starts two weeks from tomorrow, so tomorrow we will talk more about whether we are admitting Liz in the next two days or holding off until next Monday or Tuesday. Usually a Gastroenterologist does the Gtube placement surgery, but because of Liz's past surgeries, she is a more complicated case. The team is asking her surgeon his opinion on having a surgeon do this instead of GI. Liz only wants (actually, she is demanding he do the surgery or at least stand in the operating room to "watch Dr. S and make sure he does everything right") her surgeon to touch her in the OR, so I'm actually hoping that is what ends up being decided on, even if it means we wait until next week.
As if that all isn't complicated enough, we have also called Children's Hospital of Boston. They have a Motility Center there that performs the motility procedures and tests that Liz needs done. If they can see her sooner than CHLA can, we will go there. CH of Boston also has a white blood cell disorder clinic, and we'd be able to get her evaluated by them while there. Hopefully I will hear back tomorrow and have an idea of what the time frame is, and if they can see her in the next month or so I will start the enormous task of organizing getting records sent to them and physicians here to communicate with the team there.
The idea of school makes me physically ill because I know Liz is going to miss so much of it already and I feel the stress that I know she has about that. When it comes down to it, we have to get Liz well and we are just going to have to take one day at a time when it comes to school.
This is just another sucky part in the whole picture. Add in that her twin is going about life doing all of the things she would like to, and Liz must be very sad. Dr. L talked to me today about her concern (and she said the GI shares the same worry) for Liz's body image and emotions. This concern is not based on anything she has seen or heard Liz say, but instead on the fact that Liz will of course have thoughts about the G-tube altering her body, having an identical twin that is growing and developing in ways she is not, and also recognizing that the tests she will have done leave no room for modesty and are uncomfortable.
Liz already has a wonderful therapist, so we will just watch for signs of depression. Today Liz's therapist encouraged her to journal (an on-going urging!!), and I suggested a blog, so we'll see if Liz decides to do that.
We told her today about the G-tube, and she tried to be stoic. I asked her why she doesn't act sad often about being sick, and she said "Because I won't let it control me. I know I will get better and I just won't be sad all the time and let it take over my life."
What a grown-up answer. Too grown-up.

She has many, many questions about the surgery and what will be happening over the next few weeks. Some answers I have, many I do not. Child Life will work with her once she is admitted and will explain things to her ahead of time. I am hoping to arrange a meeting with her and another young girl who has been living with a G-tube, so that she can ask her questions and hear how normal life is once you get used to having the tube.
 I also promised Liz that I won't sign-off and consent until she has all her questions answered and feels comfortable with the surgery.
At therapy, we reminded her that feelings are OK to have and being sad or crying is fine to do.....and at that point, she broke down. She cried about her fear of the tube, missing school, wanting to be better, and her sadness over Collin's passing (which carries much more than her sadness over the loss of sweet Bubba. I know his death scares her).

So much confusion, sadness and a bit of chaos. Amidst all of it though, I feel comfort in knowing some things:
* Dr. L and I are fighting the same fight in that we both want Liz to have as much normalcy as possible and we want to be as conservative as possible in what we put her through
* Liz is strong and has amazing faith and the mindset that she will be better one day. Attitude is huge when you are trying to get through something so big and also in healing...and she has a great attitude.
* I have a wonderful family and the sweetest friends who offer help and encouragement.
* I know that prayer changes things, and I know that Liz has many who are praying for her.

It is unfair and difficult, cruel almost, to see our Liz have to endure so much for so long. There is no way to justify any of it or make sense of it, and that is upsetting in itself. Still, we can't wish it away. We can only pray, and I can  just try to make the best informed choices to help our girl get better. In the end it as simple and complicated as that.