WOw, that is definently scary stuff...
Huge 's thats alot to deal with and absorb, not me but for youand then to deal with it on a day to day basis.. your amazing..
He is truly a work in progress and such a little fighter!! he sounds amazing.. Like his fighting for the norm, even though he doesnt know what the norm is? Does that make sense?
Yeah i get what you mean with medications. my ds has ADHD, nothing compared to what your going through, and he is very trial and error, his been on 4 different medications to find what suits him and even now they are right for him, its bringing unwanted effects that will have to be maintained with other stuff. Unfortunately, his still undergoign diagnosis, but hopefully his will be one and not a whole lot.
Can i ask also, What about you? Do you feel like you can handle this? Although you already are, its hard to say on here lol, i mean are you able to do this unaided? Hope that makes sense..?
Do you have to have training to help with meds and stuff?
What day to day dealings do you have to do? Like physio? speech therapists?
Also do children with Angel men, have problems with hearing etc?

It just sounds like you really do have your hands full, but you ar doing such a great job that i dont ever think to ask people the whats hows and whys? Ya know?
Just seems that there is an under appreciation for mothers that have to do so much and not get any recognition for it..

I must sound weird lol, sorry, its just ive been following since you first posted and its such a rare syndrome that light isnt shed on this condition enough, well not enough as it should be.