Sorry that I have been busy lately an unable to write on Katlyn's blog as much as I would like. We seems to just get busier and busier everyday. The great thing is our days do go by really fast and before you know it it's time for us to go to bed. So all of Katlyn's research blood has come back and things are looking very good. We had a meeting with one of Katlyn's doctors, because he will be in Italy over the next couple of weeks, and what we heard was very promising and uplifting news. The showed us all of Katlyn's progress since back when she was still the PEG ADA and all the numbers are very consistent. What they are telling us is that the gene therapy seems as though it's working and they have evidence of it working. However, Katlyn is just going slow so it's really hard to say when she will be to the point that she can actually leave this room and go back to Canada.
Her neautrophils have dropped slightly to 450, but if you look at the history of her neautrophils they should go back up at anytime and even go higher this time. Overall though Katlyn does seem to be going up. Each time she drops she drops at a higher level than before and at her highest points, she keeps getting higher and higher. It's a very slow progress but Katlyn is coming along great. Her t-cell proliferation has gone back up and is 5400. It's very possible that there was an error in the test that indicated that her proliferation was at 600. Also her ada activity remains the same at a good level. Besides that we have got some good news about Katlyn's liver enzymes (ALT and AST) have both returned to normal levels. This great because if they remain at normal levels Katlyn's doctor will be switching her anti fungal med back to an oral med instead of IV. So that would mean that Katlyn wouldn't have to be trapped and hooked up for an hour and half each day. She would be free.
I find as Katlyn is getting older she is becoming much more aware of her surroundings. I think that she understands now that there is a lot more to this world than just this hospital room. When we're looking out the window at the birds she gets this quietness about her and looks back and forth form the window to the outdoors to the hallway. It is just so hard. It really breaks my heart so much. I'm starting to notice she wants out. I don't think we've ever had her wanting it until now. I just want it for her so much. She is really going to love it out there. What a day that will be.
Besides that Katlyn's creative edge is really coming out. She Absolutely love colouring everything from paper to the walls, her toes to her face. She is having a blast. Just the other day she made a little book for Johnathan and colored on every single page and even glued cheerios to one of the pages.
So that's about it for any new news. She is doing great. Things are going slow but everything is moving in the right direction.