Belated update

Ok, so I have been meaning to keep the blog updated but somehow have lacked the time and frankly the motivation. I had hoped that it would not be necessary to keep it updated...that after we returned from our 3 weeks at the PPRC the pain would gradually and miraculously go away. Now my brain remembers telling Judy, the clinical coordinator of the program that I understood that Lily may not come out of this pain-free, but hope is a crazy thing and it got me through making the decision to leave. I was convinced that b/c Lily was walking going into the program, surely it would mean that she'd improve more than the kids who went in in wheelchairs. Ok, so I shouldn't be a total downer...Lily is so much stronger and in general copes better. About a week after we got home she did have about a 10 day stretch with significantly lower pain levels. We were all very excited. But on, November 1, her pain flared again. We figured it was just a temporary set back and hoped it would just be for a day or maybe a few days. Well, unfortunately that flare has not gone away yet. We have been back to Walthan for a follow-up and are in weekly contact with them. They continue to tell us that Lily's pain will go down and that the flares will come and go but she should see longer times with lower pain. My heart hopes like crazy this is true, I have no choice but to believe this is true. Lily is hanging in there. It's been rough for her...I think the worst part for her is holding on to the belief that it will get better. At times, she feels like going to Waltham was a waste. We remind her how much stronger she is and that now she can physically do anything, she sees it but it is out-weighed by the pain.

So, now Lily is trying and we are trying to find a way to live with the pain and through the pain. It is, of course, easier said than done. We found her a psychologist here to help her with the relaxation and other techniques to help her manage her pain. Dr. G will also help her deal with the stress of all this. Lily is a sensitive, thoughtful girl, which is a good thing in some situations, but it not helping her right now, she is over-sensitive and over-thinking everything, causing herself great stress in regards to her RSD, school, swim, etc. Her pain reports have shown a tiny amount of improvement over the past week or so and she seems to be coping better. She is learning so many huge life lessons ahead of her time. Our hope is that she will come out the other end of this a strong, compassionate young lady.

More soon, it's starting to snow and I have Christmas errands to run.

~Jenny