I am long overdue on a post about  Sebastian's NF1 (if you don't know what that is, you can read my other posts about it ). After hi...

The First Struggles of Neurofibromatosis

I am long overdue on a post about  Sebastian's NF1 (if you don't know what that is, you can read my other posts about it). After his eye exam last spring, we took a break from doctors. We decided there was no need until he started showing other symptoms. Sadly that time has come. Left on our list of doctors to try is just the neurodevelopment center. I was unable to get ahold of them when we first found out about this (almost 2 years ago... holy crap I don't believe it's been that long). We finally got a return call when we tried this time and we were able to get him appointments for physical therapy, and a pediatric neurologist, which isn't until March of next year! A doctor booking out that far...what is he, a magician? I'm betting he'll just charge us an insane amount of money to tell us what we've already heard. Nonetheless, I'd like to cover all our options and make sure Sebastian is getting all the care he needs.

At this point, it is hard to tell exactly what problems he is having from this disorder. Many of the things on the lists of complications from NF1 (things like ADD, socialization problems, balance and coordination, etc.) are things that can easily be explained away by his age. Most 4 year olds can't concentrate on one task for long, fall sometimes, or say awkward things in public. How are we supposed to know when it's from NF1? I think the answer is, we don't. We guess and hope we're right.

At this point, we do think it is delaying his physical development a bit. Most obvious is running, jumping, and writing. He seems to have muscle weakness and coordination issues. Brian took him to his first physical therapy appointment last month. It went well and he thinks it will really help Sebastian's physical development issues. The therapist said keeping him active like we're doing is the best thing we can do. It was reassuring to hear that we were on the right track to helping him. We hope to get him into regular physical therapy, but are trying to figure out how to afford it (one visit cost us $330!). Interesting that you can get an entire bottle of narcotics for $10 but something that's actually good for you costs hundreds of dollars. And by interesting I mean fucked up.

The other issue that is affecting Sebastian is writing. He is very intelligent (biased I know, but true). He knows all his letters and numbers, the sounds each letter makes, and is even learning how to sound out words and basic math. But he lacks the muscle strength to write. He can write ok with markers or draw on a touch screen, but using a pencil or crayon is very difficult for him. He gets tired quickly and quite upset if we make him practice for long. I think part of that is because his muscles really do hurt or tire quickly and the other part is that they have him practice so much at preschool that he's sick of it.

He's starting to notice that some things are a lot more difficult for him then they are for other kids his age. We're being honest and telling him that yes, he will have to work harder than most for certain things. His preschool teacher said he told her "I'm trying very hard!", as if he was concerned she thought he wasn't. She knows he is and is well aware that he just wants to keep up with all the other kids. I gave her some information about his disorder the other day so maybe that will help. We put off doing so until there was an issue because we didn't want him getting treated differently unless it was necessary.  She was thankful for the info. We're very grateful he has a teacher that cares enough about her students to learn about his disorder.

The discussions with his teacher broke my heart a little. Brian and I are guilty of writing him off as lazy sometimes, which means many people throughout his life will likely do the same. We have to constantly stop and remind ourselves that maybe whatever it is, is not laziness but something that is truly more difficult or causing pain or discomfort for him. It's so hard to find the balance between treating him like a normal kid, and treating him like a kid with a neurological disorder. I feel if we constantly use that as an excuse to expect less from him, then he won't try as hard to succeed. But on the flip side of course, it would be unfair to have "normal" expectations on things that are being hindered by this disorder. We're hoping as he gets older, it will be easier to tell what is a true complication and what isn't. In the meantime, our best guesses will have to suffice and we will continue to help him in any way we can.