All for Research :)

Today's time was spend mostly on the phone with calls that concern Connor and JDM.

First I got a call to set up his medication delivery for this week and then I also got to talk to Michelle again who is Dr. Soep's Nurse and who I feel at times I talk to about three times a week. She is such an Angel helping us with any questions or concerns that come up. Right now our focus is back on getting Connor set up on a new schedule for Therapy. When I talked to Dr. Soep last Friday we both agreed that the new pain Connor is having in his knee's might be a factor of the interruption in therapy he is having. It has been fun to have an almost one month break but now we do feel it comes at a price. So today I faxed 18 pages of Therapy Evaluations to Memorial in Colorado Springs and I hope that will jump start them to call us back with a schedule :)

And the third phone call came from the lovely Dr. Rider, who we have not met yet but who is very pleasant to talk to on the phone. It looks like we get closer and closer to plan our trip to Washington D.C. to meet Dr. Rider in person and enter Connor and Alexander in the Twin Study, plus Connor will enter the Myositis Study as well. The biggest obstacle on us planning or setting travel dates is the fact that Connor is still Anemic and this will need to be resolved before we go since there will be a lot of blood drawls when we get there. It sounds like the trip will cover three days on location and if everything goes as planned and we get some good reports from Chicago when we go in July then we should be able to leave in September or October for Washington D.C. This means that I have to get busy and get all the paper work in order for our trip which includes all medical reports from four Doctors and also reports from one year prior to his diagnosis.

Connor, which I so admire about him is very excited about entering any research that could possible lead to a cure. Once again he is a real trooper :) and he is definitely a son of ours since both Ron and I are all for science and progress.

Those close to us know that we have traveled the road of INVITRO, FET and AI before we considered Adoption and I am not to ashamed at all to admit that we donated the one Frozen Embryo's that we had left to Research. There truly are no taboos for me and this is why you will never here me trying to stop something like Stem Cell research. Ron and I are also glad to be on the Bone Marrow Donor List and when it is my time to pass then I truly hope they can use every bit of my body to help someone else or use it for research. This is not just about finding a cure for JDM but also for anything that brings pain and suffering to others. No one deserves to deal with a disease that limits them or cuts their life short ...

I know I am oh so controversial but then admit you still love me :)

Oh, and I am also happy to report that as of today the sun has arrived in Colorado and we sure hope we get to keep her!

Love,

R A C A

P.S. The Pictures today are about the painting we received from one of AA's First Officer who flew with Ron a few months ago. Ron told him what he had in mind as a painting over our fireplace and this was the final outcome :)