Monday evening, thanks to Bill, the wheelchair came home. Never in my life did I think I would be so happy to have a wheelchair in my house, but it was a huge relief. Tuesday we saw the Orthopedic doctor; we reviewed the x-rays and talked about her pain level and such and came up with the following: They will keep her in the same boot type cast she is in now as they (orthopedics) want the Rheumatologist to have access to that joint. The doctor wants no weight bearing activity for the next month and we will re-do x-rays on the 9th of June. At that point (in a perfect world) if things look like they are healing properly they will put her in a walking cast and we can discontinue the use of the wheelchair. Let me clarify that the break has nothing to do with her JRA, but the wheelchair is a direct result of the JRA. Her right ankle is not strong enough to support her weight and her left hip is extremely sore from supporting the cast. We will be seen by the Rheumatologist on the 15th (Monday) and check out her joints, talk about the Remicade and the liver function issue. The orthopedic doctor was concerned about the JRA in respects to the more she sits stagnant the weaker the joints will become and feels that we need to do aggressive therapy; so we will talk to the rheumatologist about this too.
Sadie went to school yesterday, she did very well. She honestly is embarrassed about the attention she is getting, but I have assured her when the newness wears off it will go away. The school therapist came and worked with her at the end of the day and gave us some ideas for daily exercise. Sadie is never excited for PT, but I will continue to explain to her that the more she does now the less it will be when she gets out of the chair. She was pretty tired last night, fell asleep playing with Nickel (guinea pig). I will be dropping her off and picking her up everyday and she will spend a few hours with me at work each day. This is good and bad, but I am thankful I have the ability to do that.
Today Sadie’s hip was in a lot of pain, it seems no matter what position her leg is in it is sore. This is a huge frustration for her and you can literally see her fighting the pain. Even sitting in the wheelchair was causing discomfort. It is hard to watch her like that. I am hopeful that the rheumatologist can give us some advice on this. That is the latest at this point. Thank you for the notes in the guestbook, the calls and the support. We really are doing very well and just grateful it isn’t worse then it is.
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