The long of the short is this (per Dr. M’s words): we are going to throw all the mud at the wall and hope something sticks BEFORE going to fusion. He said “I really don’t want to do it… I have enough to do” – obviously trying to lighten the mood.
Her ankle is a mess and causing her a ton of pain; so one thing that was put on the table by Dr. W, but had my ears closed was the possibility of doing another injection. I really wanted Dr. M’s feedback on this (this is not that I don’t trust Dr. W, because we do, but Dr. M has look inside Sadie’s ankle multiple times and I wanted to know if he felt it would even be worth a shot). The answer? Anything is worth a shot at this point. So, we are waiting for the call to get that scheduled.
In other orthopedic news… her ankle was a confirmed mess by way of x-ray. For the first time we (Bill was able to be at this appointment which was a blessing) had a good look at the huge screw inside Sadie’s ankle. The screw has done something (which I doubted, but now can see) – she has had her gait corrected by 4 degrees. That might not sound like a lot, but it was 4 degrees in the right direction. That correction is done now, her growth plate is closed… she is done growing in her feet. The other thing the x-ray showed us was some pretty significant deformity in her ankle joint (we knew there was significant damage in her subtaylor joint – that is the joint that allows your ankle to more right to left and the reason she wears the brace to minimize that movement). Basically her talan dome has disappeared meaning any up motion her ankle does is bone on bone contact (see picture – talan and her tibia are touching). This obviously could be playing a large role in her pain. So, we have a temporary plan. After injection (that way she will hopefully be less swollen and feeling a bit better) we will start playing with small heel lifts inside her shoe. I say playing with as we will need to start little and build and see what if any variation makes a difference. The hope in this is that by tilting her foot it will not come all the way up and touch bone on bone, but created a gap that SHOULD already be there. IF it is successful there is a surgical procedure that can be done to permanently alter the formation of her foot by moving her heel bone down. This does not sound pretty to me and our hope would be just a small inside heel lift will allow enough relief to just remain in the brace rather than having to cut bone and move it. (Blah).
That is the ortho news. In other rheumatic news… Our family went to camp this weekend – KAT CAMP (Kids and Teens Get Arthritis Too). I will post more about that and a few photos from the weekend soon – we had an AMAZING time; I am thinking this might have been one of our best camp experiences, however there have been a few in the beginning years that were so helpful and monumental to us that it is hard to make that claim. However, it was a long weekend for Sadie and so some of the pain she is having currently we hope is due to a busy weekend. Both hips are sore, both her knees and of course, the ankle. All this makes me nervous as her latest Remicade infusion was just the Tuesday before camp, not even a week ago!
More from me soon about camp and injection date.
I hope each of you reading this are having a blessed summer!
Looking forward to hearing more about KAT CAMP and praying over all the decisions ahead. Hoping that something will click and finally give you some relief from pain.....praying constantly for you.
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Caceres Family