May 9, 2011

Three months and quite a different post this time. Sadie’s arthritis is doing well, her neck, hips and knees are all doing great. What the arthritis has done to her body is not so well. Her right ankle is close to if not at the worst it has been.

We saw her surgeon, Dr. M, on Friday. I walked in not really sure what to expect, but I was actually looking forward to the fact she was going to have current x-ray’s of her ankle which might help us know how to get her some relief. Sadie walked in with hope that he could help her. I’m not even sure how to put words around Friday… Dr. M thinks Sadie is at the point of subtaylor fusion (her ankle joint will also have to be fused, but Dr. M isn't sure on timing - could be done along side the subtaylor fusion or we could possibly wait, but it could be just a matter of months before it needs to be done - all of this is in question right now); he said to Sadie that she has to be ready… it’s a big, big deal and he wants her to understand what she is getting into.

After he shared about his concerns yet clearly expressing that this is where the road has lead, he asked us how we felt. Sadie said nothing (which is not like her anymore, she very much has her voice regarding her care), I responded with “is there NO other options at this point”. In genuine Dr. M form he started thinking and talking out loud. He brought up one idea he had in the past; it including cutting her heal bone, moving it and pinning it in place (to alive and obvious impingment issue); however, even with pins he doesn’t’ trust that it wouldn’t shift and therefore she would be right back where we are now or worse. He said he feels very little confidence in that plan. He talked about the fact that an MRI and CT scan will only tell us the anatomy of her ankle, which we basically know. So, through his out loud brainstorming session he decided Sadie should have a bone scan. A bone scan will give a better look at the biology of her ankle and MAYBE help pinpoint the exact location of her pain. He is pretty sure he knows where the pain is coming from and fusing the ankle seems to be the best option, but the consequences could be big. An ankle fusion in a “healthy” person can cause arthritis in other joints as they take on the work load of the ankle, but in a patient with arthritis already present, the concern is greater that other joints will have issues.

So, next Friday Sadie will have another long day…. we arrive at 10:00 and should be done by 4:30. Sadie is feeling pretty overwhelmed. One person said to me “it’s one thing to think it is going to happen, it is another to be presented that it is going to happen in the immediate future”. Please pray that Sadie feels hope and peace… peace that the Lord has not abandoned her needs, he knows her pain, hears heart and has a purposes. It can be very hard to understand those things as an adult, as mom watching your child hurt, but I imagine it is even more difficult to know those things when you are thirteen and in continual and constant pain.

Also, please pray that the result of the bone scan give a very clear direction as to ways to help Sadie. As a specific from my heart… pray that it gives another, less invasive, very clear direction that is not fusion. If we could do something to help her not suffer daily that does not require a huge surgery, with a huge recover and lifelong affects… that would be a HUGE answer to prayer.

I don’t’ know how long it will take Dr. M to review the scan once it is completed. I know that we are not going back to see him until he has looked at the scan and has considered options. He will call us and talk and we will go from there.

Sadie walked 1 block to the park with her cousins and sister today. She played with them for a while and then sat the rest of the time. Last night she was in horrible pain… heat, ice, pain medication… still in horrible pain. She is tired of this… she is growing wearing of hope and my heart is breaking for her. Our Lord is an almighty, all sovereign Lord who knows all, sees all and planned all… He can work miracles and I pray for one now. Please pray with us.