Update

Jack is having a rough week. His sleeping has been very poor. His naps as well as at night. He always wakes up at night, but it usually just once or twice and for shorter amounts and I can usual deal with him and calm his issues. Usually GI related or pain. Well this week he has been up a very lot. Leg pain mainly and a lot of cramping. He asks me to rub his legs and you can feel the muscles cramping. The only way I can describe it is like a Charley horse and it keeps happening for long periods of time. After he calms it seems he goes to sleep and them is up again. I have let him sleep with me after the third or forth time of waking because I am so tired. He then he tosses and turns and is up and needs this or that. He needs and I mean needs water and craves it . Then the bathroom due to the drinking. If it is not the bathroom for that then it is because he feels sick. Normally his naps are fine and he is so exhausted from school he sleeps well. This week or so he is exhausted, but is waking up during his nap after short amounts of time. He is very full of tremors when he wakes. He normally always has some light tremors when he wakes up and is unsteady. This week or so heavy tremors with a lot of instability. Today I got him to lay back down and he was having tremors while he was sleeping. He was very jerky and pail. His eyes for a while now have been doing some very weird things also. I have to call and get him back into the eye doctor. Another one of the many things on my to do list for him. He has been a little snotty which is normal for him. We just pray he stays well since his surgery is next Thursday.

We saw the orthopedic surgeon last week. She said the MRI looked OK. The xray taken showed the hip is still out, but not any worse so we are just watching it. Regarding his pain and periods of not walking at all and cramping she said to up his one medication. So we are doing that and we will see. She said something that I find impressive. I said to her that one doctor says this the other that regarding the not walking at all and pain and cramping. I said it is frustrating because I feel like they are mainly saying the disease is the cause and there is nothing we can do or something totally different. She said none of us know why this stuff is happening and we can only blame it on the disease or give are opinion none of them really know. That is what we already know but I gave her credit for saying it. They don't know and that is hard. I have been saying that all along. Doctors practise medicine and that is exactly what they do. There are not many good doctors out there. If you are not happy with a doctor find another. When you find a good one that cares, keep them. I thank God in our case with Jack we have found some good ones.

We see his specialist here right before Christmas so hopefully he can help in some way if the increased dose does not help with the pain. He also goes for his GI second opinion this month so hopefully we get somewhere or find a little help. The respiratory doctor had upped his medication due to his throat still being burnt. The insurance doesn't want to pay for the upped dose at all so that has been fun. Pay full price or have Jack go with out. Change the medication there is issues with that. There is never a simple answer. So we will see if we get anywhere in a few weeks with this new doctor.

Jack's spirit is still great. He even when tired acts so good. When he first wakes from a nap he is cranky but with in 10 minutes he is fine. He is all excited about Christmas and is all about the snow. The first snow fall he was overwhelmed with joy and excitement. I think a lot of us need to restore the joy and remember what it is like to be a child. Even though Jack feels bad everyday and has some obstacle he still presses on. Little complaining, little fussing, and enjoying his life and the little things. He is such an inspiration to me.