Monday, July 30, 2007

Day 68

I know it has been awhile since I have been able to write. We have just been so busy with Katlyn. I don't mean busy clinically. I just mean that an 18-month-old child locked up in one room can keep you pretty busy. She is on the go constantly. She is talking a lot more now too. It's so cute. She'll talk a whole lot of rubbish and then at the end she'll and a few words that we can understand. I love it so much. She'll say....blah blah blah blah blah blah (really fast), turn off the light?" It makes me laugh every time. This week we have been focusing on barnyard animals with Katlyn and the noises they make and she is really taking off with that pretty fast. We have been teaching her them all along, it's just I decided that this week we were really going to focus. So, I found her some animals in one of the playrooms and a animal puzzle, which she really has taken to.

So we did get the results back for Katlyn's T-cell proliferation and it went down quite a bit. It had been around 7,000 and this time it was 600. Of course again this came as a huge punch in the stomach for Johnathan and I but after speaking with Katlyn's doctor about it, I think we feel a little better. He said that this test alone doesn't really change anything with Katlyn doing well. She is still moving along very nicely. Apparently this test is so variable that it could turn out that the next time the get the numbers they could be right up there again. He said that the test is done less frequently and it's really hard to determine what the results of this test means necessary because none of the other center's doing the gene therapy have published results of these tests. They know that the have gone down, but they don't really know any more than that. So they will be doing this test every two weeks. Besides that Katlyn's neautrophils as of Tuesday are still above 500. She was 618 I believe. Which is still great. She will be getting blood work again tomorrow. Her absolute lymphocyte count went down as of Tuesday to 50. The way I see it is that we want to be sure Katlyn is at a safe level with her numbers before we leave. There's no sensing in rushing to go back home when it would just put Katlyn in danger. So we have to wait for this proliferation test to be at 10,000, which just gives all the other counts even more time to get at the right levels, and for us to be that much more sure.
Now on the brightest side of things, they did get some very good results with Katlyn's research blood. When she came here, her toxic metabolite level was at 13% and as of the last time they checked, Katlyn was at 5%, since the gene therapy. That is fantastic. That means the ada enzyme is working in moving those toxic metabolites out of her body. It is going to take time for all of her numbers to come up but it does appear as though the gene therapy is working.
Katlyn's doctor said that with the tests that they are doing and the numbers they are seeing, it does indicate that the gene therapy is working. The way to be sure is by Katlyn going into the real world and seeing how she does. She will get there, but we just want to be sure that she's plenty strong enough. So we are going to take her slow. The child form Argentina was back today for a checkup and he has been at home playing with hos brother and living normal, and he is doing great. Pretty soon that is going to be Katlyn too.
It make me glow from the inside out to think about Katlyn being able to experience everything. She is going to love the world.
Oh yeah I almost forgot to mention that I gave Katlyn a haircut over the weekend. Her bangs were just in her eyes all the time and I just decided to do it. I actually did a good job and her bangs are really cute. And most importantly, they're not in her eyes all the time. She looks so grown up. It's so hard to believe that she is going to be 18 months old in a few days.