Academically Sadie had an amazing year and really pushed herself to new heights, especially in the last months of school. She had three major speaking events in just a few weeks and did a great job - I am a proud mama for sure!!
Physically Sadie isn't doing even half as well as she was this time last year. She had a really good experience with her initial evaluation with the pain clinic a few weeks back. It was a long appointment(s) that was spread over the entire day. She meet with several docs who all collectively sat together and came up with recommendations for Sadie. We walked away with lots of new tools and some great advise and information. Some of the key things that came out of the day (the pain clinic evaluation could be an entire page of posting) were that she will be given some new tools for aquatic therapy to help her as even swimming has caused some issues as of late. She will be starting acupuncture soon and will give it a strong six weeks of trial. Today she had her first appointment to learn relaxation and imagery techniques to help with pain management and that went really well. In addition to all those day to day helpful things we also were given some pre-opp/post-opp ideas and plans for the future and some really good information on what doctors know and don't' know about chronic pain conditions. Finally the other big thing that we went over was her past history with RND; we learned it really wasn't RND at all, but CRPS (Complex Regional Pain Syndrome). The information and discussion around this put puzzle pieces together that have been missing for a long time and validated a very scary time for our family as getting answers was difficult. We also learned that this can occur again, but without warning and best of all we learned how to handle it IF it every does come up again. (Lord willing it will not!!).
Just days after seeing the pain clinic, Sadie had her appointment with Dr. W and for the most part everything was to proceed like normal. Sadie had a few bad days here and there with her neck and hips, but nothing to change the plan for, but rather find other ways of coping with those days. We also addressed the constant runny nose and cough with the suggestion to try allergy medication. I did so with resistance thinking surely it was not allergies; within just a few days of the allergy medication - she is clear - no more stuffy/runny nose - no more cough!!
However, two days after her appointment with Dr. W she started complaining of pain in her left knee and complaining that the pain was pretty severe. I pretty much passed it over as it must have gotten bumped or sat on funny, etc. The pain came on quick and hard and I figured in a few days she would be feeling better. A week later, and obvious swelling (to the point of gasping and grabbing my camera) we called the doctor. She was kind enough to squeeze her in today and confirmed that the left knee is in fact very swollen and seems to be in flare. In addition she feels her right ankle looks worse then just 2 weeks ago! This all didn't come as a surprise, but dis-heartening as truly the list of options Sadie has for treatment is shrinking to a very small list. Dr. W's first suggestion was joint injections in both the ankle and the knee. I am fairly dead set against this option which Dr. W knows, so we chalked it up to an idea and moved on. We are going to keep her on the Humira and tweak a few other of her medications and give it a bit of time. Dr. W also sent us home tonight with names and information of other medications that could be in Sadie's future sooner than we would have liked. Even Dr. W felt a tad discouraged today.
So, this is where we are. Sadie says "isn't it frustrating to know how far we have come with technology and still there are these things that even stump the doctors" followed by "maybe they should spend less time creating touch screens and more time finding cures!"
For those of you who check and don't' see updates enough, I am sorry - as always we try not to make arthritis our life... it's just something we live around. Our family appreciates your prayers. God will work this for his Glory and we trust Him and His plan. He is sharpening and strengthening each of us in our own way. We ask you to continue to pray for healing, for strength, for patience, for peace and for each of our hearts.
No comments:
Post a Comment