I know, I know. It's been such a long time since I have updated Katlyn's blog. It's just so hard to find a time that I can get access to the Internet, without leaving Katlyn by herself. With that said, there is so much to update about Katlyn.
We had her first followup appointment at the NIH and it was really crazy trying to get her on a commercial air flight. We were lucky when leaving the Halifax International airport. We found them to be extremely helpful in accommodating Katlyn. The moved our seats on the plane to the row right behind first class, so that people would not be passing by us frequently to use the washroom and such. As soon as the plane took off, Katlyn was out. She slept most of the trip, only awake for the last 20 minutes or so. I just slipped her Elmo DVD in the DVD player that child life, at the IWK, so graciously let us borrow. Everything was great until we arrived at the airport in the US. The Dulles airport is enormous. We had no idea where we were going. We had to leave the terminal we were at and take a shuttle with about 40 people other people. We were so nervous. We then took a taxi to NIH because we were too scared to bring Katlyn on another shuttle. I know she had just come off a commercial flight, but we really do not want to expose her to any more people than we have to. The visit to NIH was really quick. All they needed to do was draw her research blood and chat with us for a few minutes and then we were free to go. The trip back was not as easy. At first they were trying to make us pay extra for the type of seats we had on our way there. We didn't care though. We need to take every possible precaution that we can to keep our little girl safe. In the end they did not make us pay any extra because we really emphasized how important it was. Katlyn did not sleep on the way back at all. Besides that, the people ahead of us were really sick, coughing all the way. So, we decided to keep Katlyn under her plastic shield. I was so nervous, I ever wore a mask.
So we are still at the IWK, but not for long. It turns out that we will be moving back to Centreville. The reason why we couldn't at first was because of the well water. It turns out that we are going to boil Katlyn's drinking water, making it even safer than bottled water, and we are going to add a very small amount of bleach to her bath water 15 minutes before she gets in. This will chlorofy her bath water, just like you would be a swimming pool or a chlorification system--minus the $7,000 cost.
So as we speak Johnathan is home completing renovations. He has ripped the carpets up and is in the process of laying laminate flooring down. I will be going home for the very first time since Katlyn was first admitted 15 months ago. I really need to clean everything up and get thing finalized for Katlyn's time home. I will be leaving tomorrow and not returning until Friday. My mother will be coming and spending the week with Katlyn, God bless her.
It's also a possibility that Johnathan may get his old job back building fire trucks. It turns out that one of the guys he used to work with, will be retiring after Christmas. So we have our finger crossed!!!!!
Other than that, on Friday Katlyn's lines started to leak so we had to take it out. She had already been scheduled to have it removed today and a port-a-cath in it's place. So this afternoon Katlyn will be going to get her port put in, as well as a skin biopsy of some marks that she has on her body. We don't think these marks are anything to worry about, kind of similar to a birthmark, but we want to know as much about Katlyn as possible.
Katlyn's numbers have been really great. Before the gene therapy, Katlyn's neutrophils had never been higher than 800 on their own. She is now in the range of 900-1200. Her lymphocytes are still low, with about 150-200. However, the IWK did a marker test, and Katlyn is producing the different variants of cells that she should. The doctors we very pleased. We are still waiting to hear back about her research blood, which we should at any time.
So things are looking great. Katlyn will be home before Christmas and we couldn't be happier. The light is getting brighter each day. We are so excited to bring our little girl home for the first time in 15 months. She still has a long way to go, and this journey is far from over, but I think we are getting closer. Katlyn is going to be okay. She's a little trooper.