Hi, I've namechanged but do sometimes post on SN.
My DS2 has di-georges syndrome which is a genetic condition. Throughout his life he has suffered some fairly awful illnesses due to a poor immune system and has undergone numerous operations. He is now properly medicated and actually the most fit and healthy he has ever been.
He does however have a severe speech delay, previously thought to be due to his hearing loss and has over the last ten months been recieving excellent speech therapy. Several months ago we discovered he also has a palatial incompentece which can only be corrected with surgery.
BUT... this is fairly major plastic surgery to the back of his throat which will narrow his airways. The problem is that one of his major problems has been his respiratory system and he could end up needing assisted breathing at night.
It's so hard to know what is the best thing for him. There is little doubt that this operation will improve his speech, but at what cost is the issue.
Myself and DH have this overwhelming desire to say 'no more' and have our happy signing child who makes funny noises, but is that the best thing for him long term when we are thinking about the adult he is to become.
Sorry for droning on, just wanted to write it all down iyswim. Feeling a bit weighed down today.
Thanks for looking.