We're still waiting to hear when Jim's surgery will be rescheduled. We have a tentative date for three weeks from now. Jim is doing fine while we wait.
Eve had her first series of Botox shots in her thighs last week. It was a very low dose, but if it doesn't seem to help the doctor will increase the dosage until it does. We have a followup in 3 weeks. Eve starts physical therapy this week to capitalize on the (hopefully) loosened muscles. She has been in a lot of pain lately. She's been having pain episodes about every other day this month. Also, when we've vented her g-tube (in case she has gas causing pain), we've seen bile in her stomach. I'm going to call both the GI (about the bile) and the Neuro (about the pain) tomorrow. We've got a snow day today and the commonwealth is under a state of emergency, so the offices are closed. I can't explain the weight of my worry for this child. If ever there was a lesson in life not being fair, this is it. This poor child has enough to deal with without the chronic pain. I want to be able to fix this for her, but I'm not sure how.
I need to schedule her gj tube switch, but it's tricky with Jim's surgery coming up. Both valves on the ports are blown and leak when you open them to hook her up. Major pain in the rear end. They have also popped open by accident a few times and soaked her and her clothes. Yuck.
In other news, she's doing great at school and you just can't imagine how well cared for and loved she is by everyone. There is one classmate in particular who has stolen my heart (because I think Eve has stolen his). They seem to be partners in crime which is Eve's favorite part I think. Thank goodness for a lenient teacher!!
