Well you wouldn't know it from looking at my lack of posts, but my brain is constantly bursting with things I want to write about. Life ...
Super Fast Sebastian
Since I'm months behind on a Sebastian update, I'll just dive right in. We had him evaluated by the school district and he qualified for free assistance. The plan we agreed on with a whole team of people we met with is to send an occupational therapist to his preschool once a month to see if there's anything they can do to help him with his writing. A physical therapist will also see him occasionally to make sure his gross motor skills aren't too far behind. Both therapists have been to the preschool for a visit or two and left us notes. They both saw the things we were concerned about and are doing what they can, which so far doesn't sound like a lot. But hey, you get what you pay for and it's free so I shouldn't complain. As far as regular physical therapy, we're just going to stick with keeping him active. He's still in gymnastics once a week and he's now riding his bike without training wheels! So while he may not be running well, he's doing amazing on his bike! I was several years older than him before I would even try to ride without training wheels, so I think he's going to be just fine on physical development.
We also had an appointment at Shriners Hospital for Children to see if he needed orthotics. They examined him, watched him run and walk, and did an x-ray of the entire bottom half of his body (awesome machine there got it all in one shot). All good news there, his legs are developing fine. With NF1, deformities of the shin bone, called tibial dysplasia, can happen making it look like this. So we were relieved to see he does NOT have this problem. They said one of his feet is a little flat footed, but orthotics won't help that.
Before the appointment Sebastian asked me why he needed to go to the doctor. I told him they were going to look at his legs and see if he needed something to put in his shoes to make it easier to run. He got all excited about the prospect of the doctors helping him "run super fast!" So he was very disappointed when we left without the magic thing in his shoes. I encouraged him by saying this was a very good thing that he didn't need any help, he'd be able to run super fast on his own if he just kept practicing. Inside I cringed at my own words though. Maybe he'll never be able to run super fast, or maybe he will. I never know what to say but I feel that encouraging him to keep trying is always the right thing. He has to learn to never give up.
Up next for super Sebastian is the long awaited appointment with a pediatric neurologist at the Providence Neurodevelopment Center. We'll see what kind of doctor books out 6+ months in advance. I'm hoping for Hermione Grainger.
About author: Melanie
Mother, wife, web developer, writer. I blog about my life as an anorexia survivor, depression battler, being a mother to 2 boys, 1 with NF1, living healthy, and much more!