Monday, March 21, 2011

It Sucks!!!!

I know it have been ages since I have shared anything. Really, we were very busy just living our lives. Just doing our best to be as normal as possible. However now as I sit here, writing this post, I know that we always be anything but "normal".
When Katlyn's doctor first diagnosed Katlyn with ADA SCID, he told us that there are many many other things that can go with the condition, most unknown. I really needed to know what he meant, and he went on to describe behavioral issues among other things. At this point, I remembered Katlyn had never actually passed a hearing test, so I asked him if it was possible that she be hearing impaired. We immediately preceded in getting her properly and fully tested, and sure enough Katlyn was hearing impaired.
Since then, I've always known that other things may come along, but I don't dwell on any of it cause there's no point. I just have a "we'll deal it with it when it comes" mentality. I must admit though, the last few years have been very very frustrating to say the least. I have never met anyone as special as Katlyn. EVER! This little girl loves life and just looking at her makes me so incredibly happy. Yet she is constantly faced with new challenges in life. It angers me that she was born with the condition in the first place,but here she is 5 years old, and we are still faced with the fact that she cannot just go to a child's birthday party for fear she will get sick.
We recently learned that Katlyn tested positive for norovirus, and it is apparent that she is having a very difficult time ridding the infection. For sure, she has had this infection since December. This is a very very scary realization for us. It is possible that Katlyn could get sick, and not get better. So while we were trying our best to live our lives as normal as possible and allow her to live outside the bubble, we had to put the brakes on. This year Katlyn was able to enter pre-school. Her class is very small, only eight kids, but kindergarten doesn't look so promising. We attempted to vaccinate Katlyn, but we were unsuccessful.
Because of this virus, Katlyn has dropped a lot of weight and lost her appetite. She went from a chubby little 57 lb baby, to a skinny 41 lb little girl. After all her weight loss, her medicine was not properly adjusted (there is a lot of it too). I believe that because of this, one of her medications has caused damage to Katlyn's liver. She was recently diagnosed with non-alcoholic fatty liver disease.
So on top of her having a poor immune system, being hearing impaired, and having cancer; she now has fatty liver disease.
I was warned in the beginning that other things would accompany Katlyn's condition of SCID, but nothing could prepare for how I would feel now. It saddens me to no end that she cannot just go to school with all the other kids. I thought we'd be past all of this by now. Katlyn is five years old, and her immune system is still a terrible threat to her.