Week 3 Update

I apologize to everyone for not posting sooner. I have been sick, and out of town.

Mom went for her 3rd appointment on Monday. Dad said the doctor decided not to give her an injection this time. He needed to let her go for a while and see where she started to regress so he could get an idea where her dosing needed to be. Dad told me when they walked in Dr. Maier said "Good Morning" and Mom responded "Good Morning". That was certainly something new.

They have been working on her regular drills, and she has been doing well with the basic stuff. I just spoke to Dad and Danielle, and they are now starting to see the regression. There are times when she will sit still with them, but she is more agitated (walking around and chattering more), and some of the newer things have now gone. She is not identifying anyone when asked "who's that?", not writing or saying words when shown words written on a piece of paper, and not following verbal instructions as well as she was previously. Hopefully the timing of her regression will give the doctor the information he needs to zero in on the correct dosing.

The one positive thing that I see about this week is . . . they let the level of medicine decrease and the improvements regressed. But people are still working with her the same as we have been since day one. That tells me the improvements were due to the treatment, and not due to the extra attention she has been getting from all of the family. I am convinced that the treatment really does work. It is not placebo. It is not some artifact of being treated differently.

The doctor told Dad that there will be no WOW improvement with any subsequent treatments, but they can look for subtle and gradual improvement over the next 6 months. We saw important improvements at each of the first two treatments. So hopefully with 23 more weeks we have a lot more to look forward to.

The last visit will be next Monday, then they will be heading home. I know they will be glad to get back to their house and their friends. Another 8 inches of snow fell last night, and more storms are on the way for the weekend. So I think they will be packing up and heading south for the weekend. Danielle will be there through Friday so she and Mark will help them pack.

If there are any changes I will do another post. Otherwise, I will probably post again Monday after Mom's next appointment. So please don't worry that something is wrong if you don't get a post this weekend. Everything is going very well and we are on the right track. They will pick up the treatments with a local doctor and I will probably start posting after each treatment once that happens, and will let everyone know the final treatment schedule. But if you have questions in the interim, please feel free to post. I get an e-mail with every post and promise I will respond!

Triche