Today was a great and last night was another story. You'd think with the little sleep I got I would barely be able to function properly. Day after day I function on only a few hours of sleep. I don't know how I do it. Last night Katlyn would not go to sleep. I don't know why. She was awake until 5:30 am, and then up again at 10:00 am. That just wasn't enough sleep for me, however I was still able to function and have a great day (mind you the coffee intake was higher than normal).
The doctors increased her dose of PEG ADA and now she's getting it twice a week. I think this is a good thing. I really hope things keep going this way. It's so stressful when things always seem to go downhill. One minute your so happy because things seem to be going in the right direction for once, then it's all taken away from you with something else going wrong. It's really stressful. It's a wonder we haven't lost our minds. You might think that we'd lose hope, but if we don't have hope then we don't have anything. We'd be lost. We just take everything day by day, and enjoy our girl as much as we can every single day. Loving her is the easiest part, getting a great big atomic bomb in your life is the hard.
Katlyn is so funny. She'll stand up against the wall and let herself stand without holding on to anything. It's awesome. On the 26th she took her first steps. I was so freaked out that she was walking on the floor with no shoes on, I brushed right up and didn't have that chance to take it in. She was walking by herself. I don't know how far she would have went. She walked to two steps and was going for her third when I picked her up. It was awesome.
Also today we took Haley to Build-a-Bear and swimming. She really seemed as though she was having a great day. I really miss seeing her. It makes me sad to think that she will be leaving son. I find having her around is so refreshing. It's really to bad she has to leave. Well I guess we'll be home someday. Hopefully we'll all be able to go to Italy once a year for Katlyn's annual check up.
I just can't wait for that day, but I have to. Sometimes I dream that we're home. It's so great. I just want to be able to take our girl for walks in the nice fresh air. WOW!!!! The things we take advantage of in life. I always find it kind of funny when another parent is complaining about being here for a few days or a week. They don't understand what living in the hospital is like. They'll never understand unless they live. I never really understand how a parent deals with having a child with cancer or another life threatening illness. Not until I was put in that situation. God gives me the strength everyday to get through this.