Tuesday, September 25, 2007

Well i have to say the last few days have been so amazing for us. Katlyn has been going outside quite often, so that is what we've been looking forward to each day. From the time her little feet hit the floor,Katlyn is practically begging to be brought outside. She'll give a lot of hints, for instance grabbing her sunblock, putting on her sunglasses, and the obvious hints like making a mad dash towards the door and saying "out" or "outside."
Katlyn has always been a very happy child. Although she has been through so much in her short little life, she never seems to be bothered by any of it. Frankly,Katlyn just doesn't seemed fazed about a whole lot in life, except on thing: going outside. Every time her door opens and then closes again, a little squeal comes out of her mouth. She's always ready and willing to go. So each day we wait to see what Katlyn's numbers are at and so long as it's nice, and not too hot, we take her outside immediately. Some days, we have had to wait until after her dinner because the heat would be too much for her. Regardless of what time of the day we go, we all make the best of it and have a fabulous time.
On Sunday I took Katlyn outside for the first time all by myself. She woke up around 7 a.m., was fed and ready for her day and I just thought we might as well go. I questioned the plan a few times because there is so much to do once she comes back inside, and I wondered if I would be able to do it on my own. It was great. We went for a nice long walk, including stopping by our window at the Children's Inn and knocking so that Daddy would get a nice surprise. After that we went to the park and played until I could tell she was tired and hungry. So when we came back inside I quickly washed her hands, took all the stuff away that had been outside with us, ordered her lunch and gave her a bath. Once she was finished her lunch I put her down for a nap, which she didn't seem bother by (she was out like a light). Three hours later,Katlyn was still sleeping and Johnathan and I were outside her room pacing waiting for her to rise, so that we could go back outside. We ended up waking her up in the end. So we spent the afternoon again walking and playing, and when bedtime came Katlyn slept like a little angel.
Today was a hot day. I even found it was a little difficult to stand the heat just from walking form the Children's Inn to the NIH, which are just across the street from each other . So we waited until after her dinner and then brought her to the playground. Today was different than the previous days we have been outside because three small children accompanied us while we were there.Katlyn seemed quite tickled by the children. There were two babies and a two-and-a-half year old girl. They were very quite children, so Katlyn wasn't afraid. She actually took interest to the infants. She wanted to touch them very badly. She kept edging closer and closer, each time snatched by either Johnathan or I. We explained to both mother's about Katlyn and how she couldn't be exposed to any germs, and they were extremely understanding and helpful. Both mothers would hold their baby and I would hold Katlyn, and we allowed our children to get a good look at each other. They all seemed to have a great time. One of the little babies was just learning to walk, so she took an interest in Katlyn and giggled every time Katlyn took a step. It was a little scary, but at the same time, it was nice to see our daughter having some interaction with little people just like her (mind you, from a distance, but still).
So tomorrow Katlyn will have her research blood drawn which will tell us a lot of things about how the gene therapy is progressing. We are going to plan to come home for next week, a test pending. We will find out what Katlyn's t-cell function is next Wednesday and if it is above 10,000 and all of her other numbers are good, we are free to go back to Canada. It will be really nice when we do finally get to go back home, but at the same time, we're trying to prepare ourselves for not going home just yet. This will be the fourth possible chance to go home. We don't want to get our hopes up because we don't want to be hurt so badly like the last time. However, we still have our fingers crossed. Please keep us in your prayers. They have worked very well so far, and we still have a long way to go.