It is so nice to be back in Canada. I knew I really missed being close to home, but now I know just how much I did miss it. Right now the IWK is the closest thing that we know to home and it is so nice to come back here to everyone waiting for us. It was nice to be able to see our families too. The visit with all the Grammies, Grampie and Haley was great. We missed everyone so much. It was very interesting to watch Katlyn's reaction to Haley. She was really fascinated by her.
While we were at the NIH, Katlyn was allowed to go outside, so long as all her numbers were at safe levels. We were very unsure how that would work once we came back to the IWK. This is a completely different environment, and frankly I couldn't even understand how we would safely get er from her room to the outside. After careful consideration we decided that it could actually be done safely by putting Katlyn's plastic shield over her and heading the least travelled and practically vacant part of the hospital. It wasn't so much the outdoors that scares us. It was getting Katlyn from her room on the 7th floor, all the way down on an elevator , and through the halls and out the building.
We discussed our ideas with Katlyn's doctor and he felt comfortable enough allowing her to go outside. We are so happy. Thank you so much Dr. Issekutz. Katlyn is so happy when she is outdoors. She gets these huge bursts of energy and I find that she glows after one of our adventures. I'm glad that her doctor here felt that because Katlyn had been going outside at NIH, that she could do the same here.
We had an awesome day yesterday. We went out to the play garden and Katlyn absolutely loved it. At first she was a little slow getting started, maybe because she hasn't been outside for so long. However, once we started to play soccer, she was off. She played on the swing, went up the stairs to the jungle gym by herself (with supervision of course) and down the slide by herself. After playing in the playground for awhile, we decided to take a walk to the waterfront to see some oats. Sure enough there were a couple out there as well as some ducks. Katlyn really enjoyed herself. I find that every time I'm that close to the ocean, I get a very overwhelming relaxing feeling. Apparently Katlyn did too, because she fell asleep on the way back. It was fantastic.
Katlyn is doing very well clinically too. Really we don't have any concerns. Like usual her numbers are slow climbing up, but they are going up. She hasn't needed GCSF for about a month now. Her neautrophils as of today were 740. Unfortunately her lymphocytes were only 70 today, so we will not be able to go outside until she is over 100. I'm going to talk to her doctor to see when we can repeat the test, hopefully Thursday or Friday. He has only been checking her on Mondays since we have been here. Also, Katlyn will have an infusion of IVIG tomorrow as well as an ultrasound of her thymus gland. They want to see if it has got any bigger since the gene therapy. The thymus glad is where t-cells are produced.
Katlyn's research numbers were great also. Her ADA activity is 20, her toxic metabolites are down to 4 and her t-cell function was 10,000.
