While things looked dire, we tried the inensive rehab therapy in downtown Chicago through the RIC pain clinic. We went into it thinking they would help us define the correct support devices for Bean and help her to begin walking again, but this program was not geared for the type of EDS issues that Bean was dealing with. It is a pain clinic geared toward people with chronic pain and the fit was not perfect. There were problem areas where therapists in PT or OT would tell her to ignore burning nerve pain and to push through dislocating shoulders and end of limit pain. While this may work for some situations, it created quite a bit of discord for this situation.
So, after giving that program a good effort and 6 weeks, we stopped and Bean saw her specialist, Dr. Tinkle. Dr. Tinkle knows more about this than anyone we've ever encountered and he was wonderful with Bean. He told her what she needed to hear, educated her, and listened to her, too. I believe that the combination of meeting with him and stopping the RIC program gave her a new energy. She wanted to try walking again. She was asking me to take her out and walk. I was shocked. After months of her giving up, she wanted to fight!
Initially, 100 steps was enough, but it quickly went to 400, then 800 and one day last week she made it to a collective 3000 steps over the course of a day. Our current goal is to get her walking in school without a wheel chair this fall. She will likely still need the chair for flare ups and for longer walking or standing situations, but this progress is amazing and we are renewed and hopeful, again.
She is still not able to do stairs very well. This causes a great deal of pain in her hips, and subluxations. With that comes a fear of falling, as she has lost her hip control on stairs too many times in the past. To help this stiuation, we have moved her living space from the top floor to the ground floor for the past 5 months, and the whole family is now relocating to a house where all the living space is on the main ground floor. This will help keep Bean included in all family activities.
So, we have a post that is positive. It's hopeful. It's heading a direction of ability in a world of decline. I am proud of my girl for each and every step and I hope to come back with more postings that build on this strength and hope.
