Annual Check-ups

We're going to be going to Cameron's annual genetics appointments on Monday. I've learned (through my 4 years with making genetics appointments that are FAR from home) that it's easier to get as many appointments scheduled at one time as possible.
So on Monday we are having his opthomologist appointment. At THIS appointment they will check his optic nerve to make sure that there aren't any tumors growing there. It's also handy as his annual eye check-up. Two years ago we learned that the poor boy inherited his mama's awful eye-sight. He has astigmatism and is slightly near-sighted. This time we're hoping that the glasses we get for the boy will sit better on his face! (That's OUR choice though....not the doctor's!)
The genetics clinic is only open for appointments on Tuesdays, so Tuesday is our genetics clinic day. His doctor has been with us for YEARS! We started seeing him when he was still a student. But he has since graduated and become a bona fide doctor! I absolutely LOVE this doctor. He's more concerned with Cameron's well-being than his regular pediatrician!! Seriously, this man is WONDERFUL!! He's given us his direct line if there's ever ANYTHING that happens! I wish he was our regular pediatrician, but since he's there and not here....

Cam will also be getting some tests done for some research projects. Since there are varying degrees of NF1, they want to see if certain forms are linked to other things or if having a certain form of NF1 precludes you to getting something else. An example: they have found that many people with NF1 have scoliosis (curving of the spine) and they want to see if it's linked with one type of NF1 more than the other. There are two ways to detect NF1 in DNA, either a mutation of the gene or a gene deletion. Cam has the gene deletion. Because of these tests with the research lab, we've discovered that Cam has a SLIGHT curve of his spine, and we went back for MORE testing to find out exactly why. When we went back, they did an MRI. Doing an MRI on a child this young requires sedation, which isn't very fun! At his initial MRI they found that he had some items "of interest." At the second MRI they discovered that the items of interest weren't just malfunctioning lymph nodes, but actual plexiform neurofibromas (tumors caused by NF1).

Thanks to the discovery of these tumors, we need to keep an eye on them to make sure that they don't change and become fast-growing and possibly cancerous. So, on Wednesday we'll be doing our third MRI. We've learned, from previous experience, doing the MRI early in the morning is best, so we'll be ready to go at 6:30 in the morning!! Uh, yay!? But with this being the LAST appointment for this trip, we can leave for home as soon as my child is coherent. (And by "coherent," I mean awake, but tipsy!)

I'm planning on documenting this trip, so anyone who wonders about my trips or the things we do, will have a better idea of what we do! I want to video tape the boy once he wakes up from his sedation, so you can see his drunken-demeanor. (I know, it's not very nice, but it makes me giggle with how much Cam thinks he's in control, but with how LITTLE control he actually has!)

So if you wonder about me, that's where I'll be. Don't worry, you WILL get the update...when I feel up to it! ;)