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....
I used to have to get sedated all the time when I was younger! I remember the syrup, and fighting the sleepiness, because I knew what was coming. But now I find an MRI kind of relaxing, as weird as it sounds.
ReplyDeleteI am 29 year old femaile with NF1. I saw your family on the Today show some time ago and have been wanting to write to you with my experience for some time, with the hopes of easy your minds of the future with NF1.
ReplyDeleteI have the usual symptoms of NF and I also have a tumor that was disovered on my optic nerve 12 years ago just by chance. (I had bumped my head and my pupils were unevenly dialted and they thought I had a concusion.) They tend to do more testing now then when I was growing up and push for the growth hormone to be given.
I did have some learn difficulties but with hard work I overcame these. I gradated college with a degree in Bus Admin/Finance with a 3.7 GPA.
I do have to have my tumor they found followed through MRI's and visual fiedlds, but in 12 years it has never grown. The specialist that I have seen since I was 6 months old said that these rarely grow and are usually there from birth. I hope this brings some comfort.
One of the other concerns that you may have is her passing on the condition to her childern. I inheriated the condition from my father and my brother also has it. However, with today's technology it is possible to go through infertlity treatment and us PGD to determine if an embryo has the condition prior to transfering it, so that her child do not have to go through the same thing. My husband and I did this and we now have 6 month old twins who are NF free.
I do think about my NF from time to time and wonder what will happen. However, I have been very healthy and my Mother said she worried all the time when my brother and I were growing up. He also has very few problems with his condition. My hope is to easy your mind that even with having NF you can have a fully productive, happy and healthy life.