Skyler had his wellbaby appointment on Monday, he weighs 10 pounds 10 ounces, which is about normal for his uncorrected age. His head size is normal too, but his growth seems to have slowed, he has only grown half an inch. And he has a heart murmur, and he has nystagmus. So we are being referred to both a cardiologist and a neurologist. He also needs his bloodwork done for endocrinology sometime this week. Too bad I didn't ask if she could refer me to someone who will keep me from ripping out my hair with worry. Argh.
I love that our NP reassured us that it sounds benign and he'll probably grow out of it, but she sent referrals to specialists just to make absolutely sure. I didn't have to pull teeth to get him checked out, she didn't treat me like a stupid/crazy parent. She respects us and our son and I love that about her. I couldn't imagine having anyone else taking care of me or our son.
So I mentioned last time that I'd talk about our decision to homeschool. We've reviewed our options and so far there is no other way to do it. There are just too many variables. He is going to need his teachers to know when to give his meds, how much to give, how to administer them and how to document it so that the other teachers and his parents (us) know exactly what time it was given at and how much he received. And it's not as simple as a certain time of day a certain amount. He will have his scheduled pred every morning, but if he needs a stress dose someone will have to be alerted to that fact, decide if he is stressed out and then give him the appropriate amount of meds and document it because he can't have another dose for 12 hours after the stress dose.
Which means he would have to have someone with him the entire time he is at school, in case he falls at recess or gets hurt in gym class or has a fit in math class, or catches a cold and starts sneezing in english class. Which means he'd likely end up in a special ed class. Assuming he is neurotypical this is not something I want for him. First of all I don't trust anyone else with his meds. Secondly his needs are not as severe as many others and I don't think it's fair to the other kids or him to have to have special ed resources when we could easily manage to teach him at home until he is old enough to manage his own meds.. Especially if he ends up being in lifeskills classes or something and gets left behind. Any thoughts on this? Maybe I'm just crazy