I know that isolation defiantly limits the amount of things you can do with a child at that age, but my goal has always been to make the best of it. So what if we can't go outside? We just make the inside of her room super special. I try my best not to think about the things we are missing out on. It doesn't help when I think like that. All I can think about is how lucky we are. We have Katlyn. We are so lucky that that girl is so healthy and so happy. She's 13 months old and weighs in at 26lbs 8oz. It is so incredible.
When we first got here the doctors didn't think that Katlyn had SCID because of how healthy she was. When they learned her diagnosis they were fascinated with how great of shape she was in. We kept getting told over and over again how we were great parents. I guess when these kids usually come in they are extremely sick, weighing about half Katlyn's weight because they have a failure to thrive.
We are so LUCKY!!!!!
And talk about happy. It just doesn't matter to Katlyn. You would think with the amount of poking and prodding that she has encountered so far in her little life, she would be miserable. She's not. I have really never ever seen a child happier than my daughter. She just has such a sparkling personality. She's my little jokester.
Someday soon we will be able to do all of things that we are missing out on like give her a kiss or take her for a walk in the fresh air. But for right now I'm just focusing on what is in my control. I can't control the fact that Katlyn is confined to her room. Jeez if I took her out I think her doctor would have a conniption. He's almost as careful as I am. All I can do right now is try to spend every moment with Katlyn in the best way that I can, having fun. If she doesn't see me upset than she has no reason to think that anything is wrong, and I am going to keep it that way.