I'm so sorry if it seems as though I have neglected Katlyn's blog. I haven't. I found out on Monday, the day we arrived, that I have a kidney stone. A rather large on the is causing quite a bit of pain right now. On Tuesday I'll be getting it lasered so that I can pass it and so hopefully the pain goes away. When that happens I will give everybody all the details.
Katlyn is doing great.
I don't even know where to start. How about I start by saying that we're okay. It's really nice here. The trip here went pretty good. When we were coming in to the Baltimore airport,the ride was pretty rocky. Katlyn was okay though. I think that it was because we are always playing rough with her. She never even cried. We were on a very small plane and the wind made the ride almost feel like we were hitting a brick wall. We just kind of made it a game for Katlyn and she didn't cry once. She was actually laughing. I know the flight was hard on my belly. I can imagine how hers felt. So after we arrived in Baltimore we had to drive about 45 mins the Bethesda. That part of the trip went pretty easy. Katlyn was so tired, she just slept most of the was anyway.
She we now live at the NIH. WOW!!!! There is now way to actually describe this place and do justice. The hospital is spectacular. As soon as we got here they got right on the ball. She had an x-ray, EKG, and an IV put in. She was very tired when it was finally time to let her head down. The isolation is very different here. We do have to gown, mask, glove and put booties on. Katlyn is allowed to play on the bare floor because we wear booties and her floor is cleaned twice a day. She loves it. She's actually on the floor right now as we speak. The funny thing is she never really plays with her toys that much. She still finds more interest in the things she shouldn't be playing with, like for example right now she's playing with the blood pressure machine. I think that Katlyn will be walking at any time now. Now that she's able to climb up stuff like a regular child in some sens4e, I think it's only a couple of weeks before we see Katlyn walking.
Katlyn is on a low neutrophenic diet. Her doctor explained it to me and they don't even have some called low-bacteria. Instead, they use the neutrophenic diet to feed all their SCIDs patient, cancer patients and children that are at risk for germ. It's nice because now she can eat a lot of the things that she wasn't allowed to before.
Katlyn has been getting so many tests done to see if she qualifies for the gene therapy. I'm pretty sure she's going to and her doctors so to. She has a little infection in her arm because of an IV line that was there. The infection is under control, but this will set us back a couple of weeks. She now has a new line in to give her antibiotics which she will get for about 14 days.
All of the tests have been perfect so far. Again, sorry if I seem rushed. I'm just in a lot of pain and just wanted to at least give somewhat of an update. Katlyn seems very happy though. We miss everyone so much!!!!