Katlyn's Doctor came to see her today and seemed to be in a great mood. He said he and his brother were going to talk about what we'll be doing with Katlyn, whether we keep her on the PEG ADA or not. The type of SCID that Katlyn has is ADA ,there is a lack of the enzyme adenosine deaminase (ADA). They take ADA enzymes from cattle and boost the full of sugar (so that Katlyn doesn't just pee them out), and this temporarily replaces her ADA enzyme.
I imagine that they'll speak with Dr. Aiuti some time this week and maybe (cross my fingers) they'll know something, anything would be great. It would be really nice to hear that Katlyn will be going to Italy. That is really what I want so badly.
She really is a complicated child. I have a feeling that even when she is feeling better and older, she'll continue to take me on an adventure for the rest of her life. What a doll!!!
She was a littlle cranky today. I think it's because she's getting her first molars and eye teeth coming in. I can't even imagine the amount of pain teeth would cause. Daddy just put a little oragel in her mouth and she was great. What a trooper.
The feeding is going really well too. Until fairly recently, Katlyn was only allowed to drink formula, eat puree bananas and cereal. Because she was stilleating the same food as a baby, she was gaining at the same rate, which was too much for a one-year-old. Now she is able to eat english muffins, zoodles, toast, oatmeal, peaches, pears and real cereals...just to name a few things. She is loving it. At forst it was really hard for her, making her gag. Now she actually trying her best to chew her food. I have seen a lot of changes since her food changed. Her formula intake is less, stools are more formed (stinkier too!) and she's eating a lot less. I really feel as those she is satisfied.
Right now I'm cooking some supper down at the Ronald McDonald room. They have a stove and everything to use here, whereas the rest of the hospital only has a microwave. When I'm done eating I have to bath my girl. What an adventure that is!!!!!
Just to be on the safe side we bath Katlyn in sterile water. What work, but the girl has to get clean. She loves her baths so much. she plays and plays in the tub, and she gets so mad when I take her out. What a girl!!!
Tonight we're taking Haley to a movie at the IMAX. I think I'm more excited that she is.