Hello Everyone,

I know that some of you have been worried about me, but since my return to Ottawa I have been very busy with school, essays, catching up on some History reading. My suitcase also went missing and some of my medications (including my morphine, and my favourite outfit), got taken. My suitcase took a sidetrip to Montreal while I was supposed to be on a direct flight from home to Ottawa.

I found someone to make my video for Dr. Albright (expert on CP, Dystonia, Intrathecal Bac;lofen Implantation for both diagnoses, and selective dorsal rhizotomy (which I have already had). I know it is a long shot, but I have asked if there is any way he might take care of me. The team at home diagnosed me with dystonia in a letter to an outside agency (not even directed to me), and Intrathecal Baclofen testing needs to be done much differently to see if it will help with pain and dystonia. I am writing to ask that you pray that either Dr. Albright will take me on, or that he find a suitable paediatric surgeon in Canada to help-- maybe one that he has trained.

I KNOW HE WILL HELP IN ANY WAY HE CAN AS WE HAVE BEEN TALKING FOR MORE THAN 2 YEARS VIA E-MAIL.

I also ask for your prayers because I have also sent a video to Camp Scandinavia (makers of the SWASH, or Standing, Walking, Sitting Hip Orthoses to help with scissoring gait. They are just starting to test one for adults in Spain,but if I am deemed a candidate, they will send me one for FREE and let me be part of their study to helpimprove it, etc. I have been asking about it for 2 years as well.

The other news is that I finally sennt my video to Orthoproactive, who make the Hart Walker here in Ontario. They are going to do some experimenting for me and see if they can come up with a version of a gait trainer that can take the majority of my weight (can only walk for less than 3 minutes at as time at the moment with extreme pain). I really hope things work out because I want to much to feel safe standing, use my muscles to walk, maybe go to the mall and not be so tired, etc.

My GP referred me to another neurosurgeon in Toronto re: Dystonia, but he does not do ITB therapy, just all the other invasive procedures. So thats why I hope Dr. Albright will help. I have also referred myself to a pain clinic not far from where my aunt lives in Toronto, and have an appt. in about three weeks with someone who specializes in backs/ is an anaesthesiologist. Someone new needs to take a fresh look at the pain issue, order the necessary tests (CT SCANS/ MRIs of my head and back not done since I was 17).

Even if dystonia is my main problem, I need ways to cope in the meantime, and a doctor who does not assume things because they have seen me for years.

Please say a few prayers that this all works out somehow. I know it will, but having other people pray really helps.

Thanks,
Jenn