Just So Thankful!

We've had all of Julia's appointments in the past 10 days. Not intentionally it just worked out that way. So we've been in and out and all over New York City. Every appointment is stressful, even if we think Julia is fine sometimes something comes up that's very unexpected and throws you for a giant loop. We were the most worried about her growth recently. It added a new layer of questions and concerns. NF children can grow too much or too little. Most NF people tend to have small stature. Of course no one knows why. Julia's Dr. was concerned because she had dropped off the growth chart for awhile. She had hardly grown over 2 years. So the curve you normally see was a flat line across in her case. This could have meant tons of things. Things that caused my mind to run on overdrive for the last three months. Thank God she grew while we waited for this appointment. The endocrinologist we saw was really nice. He was on time, didn't scare us with the many varied and unusual things that could happen to Julia and was patient with our ladybug girl.

Julia is so comfortable with Doctors she chats with them like their friends. It's good in some ways because she's never scared and when they ask her if she has any questions she just talks away. On the other hand Julia can be a little fresh. We're working on that- but I think her firecracker personality is going to be what helps her endure NF and all it brings.

I'm always amazed by the ease with which Julia reacts to her appointments. She always asks "Whats next? The sleeping Doctor?, The check me Doctor?, the spray my eyes Dr?" She asks me several questions each time- boy Dr. or girl Dr.? Do we need to get up early? What's everyone else doing while I'm there? Once she knows the answers she's fine.

Her latest series of questions is sadder for us. Julia keeps asking if she'll have NF when she grows up. Each time I answer yes honey my head wants to blow up. She told AJ she didn't want to have NF when she has a baby of her own. I feel like this innocent part of their lives is going to end. All to soon my babies are going to know the full cruel meaning of what NF is. It's been a heavy load for Anthony and I to carry I can't imagine how my children will do it. It's so sad that my children will never have the freedom I had as a child. They will never know a life without NF.

We are so, so thankful Julia grew. So thankful for more time that's closer to a normal childhood. The relief we feel is unexplainable. We slept tight that night because for now, for today she's ok. People always say "Tomorrow will be better." In the land of NF today may be your best day, tomorrow who knows? That's what progressive means.