Yesterday was the Rheumatology visit; I am glad that Dr. Wallace cares about Sadie and it was very apparent at this visit. First, Dr. Wallace was not at all happy with the type of cast/brace/boot Sadie’s broken leg was in and I agreed. Her heal kept slipping out of it and this was causing her foot to be in planter flex position and was causing Sadie pain. So, she calls Orthopedics and had us seen immediately after the appointment where they put on a new brace/boot that is much more user friendly in size and weight. In less than 24hrs the swelling is all ready going down because the new boot fits; this is great news!
As far as her flares are concerned… her left hip and knee are not swollen and the range of motion is good – Dr. Wallace thinks that the pain Sadie has been feeling is due to the muscles around the joint having to do so much work to support that huge brace/boot she was in. Also, she feels the way she has had to sleep has been causing her a lot of morning pain. These are all things that with the new brace hopefully will get better. On another good note; Sadie’s neck and jaw look really good to – yeah! They are not 100% on range of motion, but may never be. The fact they are improved and the other two joints are better means that the Remicade is probably working.
The right ankle (the problem joint) is still a problem! Dr. Wallace would like another steroid injection in both the ankle joint and the subtalar joint as the swelling hasn’t gotten any better and the range of motion is lacking again! In a way this surprised me only because she has had so many injections, but in another way… I understand why. Sadie is resistant to the injections for the first time. She remembers the last time she was put under and has some fear about doing it again. She has had several injections, but the last one is the first she vividly remembers. I am doing my best to assure her that it will be okay and that it is meant to help her. I think the best thing I can do for her is to stay calm.
We will do these injections and continue to do Remicade every four weeks for the next three months. At this point we will see how she is doing and hopefully be able to push the Remicade to every six weeks. We will be increasing her physical therapy too, but I don’t have a lot of information on this. I will be getting a call soon.
Dr. Wallace assured me that they will be watching her liver function closely and that it was a very good sign that from one test to another the numbers dropped. She said that if the numbers stayed the same or got higher, she would be concerned, but since they were dropping this means the liver is functioning and is a good thing. As a mom, I would rather not have her liver function tests come back irregular ever, but I feel better knowing what to watch for. They will do more blood work prior to her next Remicade infusion and let me know how the numbers look.
As of today (pending no calls about injections or PT) our next appointment is Monday with the naturopathic doctor and then Thursday (25th) she has Remicade again. I will update if I get information as to when the injections will be – otherwise I will probably update after the next Remicade.
Thanks for the emails, calls, cards for Sadie and general concern – you are all so special to our family and more of a support system then words can describe!
God Bless,
Theresa
UPDATE: Sadie is scheduled for injections at 8:00am on Monday; we will arrive at Children's around 6:00am to get ready for the procedure.
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