Ugg...

My little brave ladybug did really well during her unsedated MRI but she was blinking and moving her jaw. This caused motion on each "slice" so we have to try again. We are going to give her a Valium and see if that will make her sleepy. This way she will be still enough to get good pictures. It was so disappointing but we didn't want her to know that. Now we wait for the next appointment. ugggg... This is tough, seeing her tiny girl face in the MRI, she held me hand the whole time. I had to stretch into the machine to reach her. Oh my little girl, if I only I could kiss you and make it all better.

I know this could be so much worse. I know that I shouldn't be so sad that we have to go for another MRI, but I am and that's that.

Our huge fundraiser is coming up. It's so good to focus on that. A few days after that I'm running the NYC marathon for Julia. After that I have no idea what I'll do with all this energy. I'm sure I'll dream up something....

Scan-ziety

Julia's next MRI is on Saturday. It's all I can think about. We're trying this one unsedated. It will be her first without anesthesia. She gets so, so sick from anesthesia I'm really hoping she can do it. We've been practicing laying still- strange right? Then I say loud "BEEEEPPPP" . We also told her she can eat before and choose anything she wants at Toys R Us after. Julia is so excited about Toys R Us. I think I should get a present too- like a Tory Burch bag- but Anthony disagrees. He says it's part of my parenting job! I was going to remind him that there aren't many parents that see, hear, and have to go through what we have too, but I stopped. Anthony can hardly talk about NF without getting teary. I hate the sadness that goes with living this way. I hate the nervous questions AJ asks me. I get tired of trying to always be upbeat and I feel like my answer "Everything will be ok." is a lie my children can see right through.

I'm also so worried about her brain. I just want her to be fine. I want that brain area that's acting like a tumor to disappear. I want the results to be fine so bad it makes my heart hurt and my brain churn all night. I can't even imagine the future. There are so many days when I feel like I can think of nothing else but time and how quickly it passes. There is a strength you feel when you know your living with a progressive disorder- you value all the time you have like it's a treasure. It's very difficult to think ahead. We really live day by day. It's just too painfull to think about our very unknown future.