June 19, 2008

Sadie had her monthly Remicade infusion on Monday; it went well, again only one poke and it seemed to go faster this time which is always nice. Sadie had an appointment with the surgeon later that day and Bill was able to come to that visit which was good. Basically the surgeon gave her a clean bill in regards to the surgery... he does not believe the current issues she is experiencing with her ankle have anything to do with the surgery or anything he can help with and feels there is enough swelling in that joint to justify modifying her medications. He referred all ankle issues back to the rhematologist, which didn't really surprise us. The two things he did say that were helpful were that she should be back in a brace as she is walking on the outside of her foot and that has not improved without the brace (not to mention that Sadie has told me the brace actually helps her feel better) and he confirmed she is a candidate for a surgery in the future that could help her leg difference (right leg 1'+ shorter then left). He explained that we all have one leg longer, but with people over 3/4' there is a minor surgery they can do right at the point that skeletal development is almost complete where they cut the growth plate on the longer limb to allow the shorter to catch up. The procedure is a little more tricky with a person who has joint issues because their growth pattern is usually not as easy to predict, but none the less, he will start monitoring her growth and determine the right age for the procedure (probably 12-13 years old).

Sadie goes in next week to start the process of being fitted for the brace and to get some further summer suggestions for therapy (she will have an at home program during the summer).
As far as how she is feeling, she has good days and bad days and pains that are new. For myself I have always been able to gage Sadie's "normal", but since the surgery I have not and so now it is trying to adjust and learn what is her norm and what is totally abnormal. Sadie uses a pain scale of 1-5 (she has since she was little) and before surgery she was always, everyday a three, sometimes her numbers would climb, but she rarely if ever went under a three. Since surgery she has had days that are zero and she has had what she calls "threeish-fours" but there is not much consistency or understanding as to why some days are great and others are not. What she confirmed to Dr. Mosca is that she pretty much feels some kind of pain every day. Part of this may be that after surgery she felt great and was pain free for a while which she probably really doesnt' even remember in her life so now she has a different feeling to compare too. Some of it might be normal growth stuff, when I say that I mean, when you are growing I think there are just some normal aches and pains and it is hard to gage which is that and what is specifically JRA related. What we do know is.. there is swelling in her ankle, the ankle is still a problem. However, since surgery she is doing more activities then before. She is walking more, running more, playing more - all of this is a HUGE improvement over me intentionally not even taking her to the grocery store out of fear I would wear her down.

All this said, Sadie doesn't go back to her Rhematologist for quite some time; not even on the calendar yet and unless I see a huge downward turn (which I do not expect) I am not jumping to change the way things are for now... so we will stay on the treatment plan we are on and see how things go for the summer. My prayer is that the brace will offer the extra support she needs and that the medications continue to control any further issues in addition to jump starting some change in her ankle.

Sadie is still having some issues with her throat with really are unexplained that this point. She has no other syptoms, but her tonsils and lymphnodes are still very swollen and she still experiances pain from time to time. She has no fever and no other stuff going on so the doctors don't really have an answer; I am wondering if it could be medicaton related, but even that doesn't seem to make any sense. So, please be praying that this odd thing dissapates.
I thank you for those who gave feedback on keeping this site, it is still something I am up and down about. Not only has this site given me an opportunity to keep people informed as to what is going on, it has also given me some references to where we have been, done, seen in her condition and I have referred to here to confirm dates and doctors, so it is a helpful tool for me too. I do appreciate all of you who care of Sadie and are praying for her and sending her your love!