Worried about my baby

Waiting4myJulyBaby

Not the one I'm pregnant with, but my 13 month old

Here's some backstory, when he was 8 weeks old he was hospitalized for viral meningitis, he had to have a spinal tap and was on IV antibiotics and fluids.

Totally unrelated, around 9 months I noticed him shaking... like not the chills but his whole head almost shaking like a seizure, I mentioned it to his doctor and was told he was probably peeing (I guess little boys sometimes get the chills when they pee) or that he was probably just experiencing weird sensations in his gums from teething. Well I caught it on video a week later and insisted his doctor see... she was concerned and sent him to be seen by a pedi neurologist at Boston Children's Hospital. They weren't too concerned and said it's likely an under developed nerve system and he'd grow out of it, but they were concerned because he has little brown spots (cafe au lait spots), he had 2 at birth and now has 10 (they look like bruises or birth marks) and these can be an indicator of a nerve disorder called neurofibromatosis- from what I understand there can be growths that suppress your nerves and cause motor function issues,  he then saw a dermatologist who referred him to a geno-derm clinic for further testing, soonest appointment I could get is next month. 

Now today, I was weepy already, my sister who is a pediatric nurse and nursing professor started asking me questions about his upcoming appointment then told me she's been hesitant to tell me until she was sure but that over the last several times she's seen us she has noticed my son has hand tremors.  He's really easy going and has been sleeping up to 18 hours a day which at his age worried me already but now I'm even more convinced something is wrong... I'm going to call his doctor tomorrow and I'm avoiding googling because it will only freak me out more. But I can't help but be sad for my little man- I hope nothing is wrong! 

I know it was long so if you got this far thanks for reading!