I know that it has been awhile since I have updated Katlyn's blog. To tell the truth things have been a little hard for us since we found out that we wouldn't be coming home. We have been trying to de-scramble our brains and get back on track. I think we are doing a lot better now, but sometimes it can get really tough. It will soon be a year that Katlyn has been in isolation and we are so anxious for her to come out. I think one of the biggest things that we had a hard time was the fact that going home meant that Katlyn's was doing a lot better. In essence by her not going home, it kind of felt like the opposite. That is not true though.
The t-cell function test that stopped us from going home has a lot of probability of error. I think that everyone was kind of surprised by the results to say the least, and I think we are kind of thinking it may have been a mistake. They took the blood for that test last Thursday, so it takes about 10 days to get the results back.
Besides that Katlyn is doing fantastic. The GCSF seems to be working very well. Her first shot lasted up until yesterday which would make it about 12 days I think. She got a new shot yesterday and her neutrophils shot up to 13,000 today, which is great because it show that her bone marrow has that reserve. Her lympocytes also seem to be going up gradually. Before it seemed as though Katlyn barely spent anytime over the 100 mark and in the past week and half she has been over everyday except once. Today she was just under 200 and yesterday even higher.
The doctor told me today that Katlyn's numbers are looking really great. She has the highest ADA activity since she has been here, basically she is half way to normal. Also, her toxic metabolites are staying low as well. So those two numbers show them that the gene therapy is working. It will only be a matter of time before those new cells get stronger and take over and Katlyn is fully restored. The reason why they think everything is taking so long is because they gave her such a small number of cells to begin with. Also they think it's possible that children with ADA may also have problems with neutrophenia, as they have seem with both Katlyn and their previous patient.
The little princess is great. She is now fully transitioned from lactose free formula to regular whole cow's milk, and she is having no problems at all. She is starting to want out of her room more and more, and she seems to be getting braver and braver. Sometimes when the door opens she rushes over so fast she almost escapes. Also, if you have her in your arms and you are in front of the door she will try and open it. It will be really nice when Katlyn doesn't have to be in isolation anymore.
This have been such a long road and we still have so far to go. The thing is, it could have been an even harder road, and I just keep trying to remind myself of that. Katlyn is doing great. She's not sick and the gene therapy is working, and that's exactly what we want.
