YouTube is another place to check out. There you can see other SMA children and what their parents have done for them. Good channels to watch are Bill Strong's channel who's SMA angel is Gwendolyn Strong who had type 1 and lived till the age of 8 and was and still is the inspiration for the Gwendolyn Strong Foundation. Brad Fisher also has a channel which shows all the treatments he dies for his Type 1 daughter including cough assist, physiotherapy and their day to day life.
The Goodentree channel shows little Nora and how much fun she has despite her Type 1 diagnosis.
Facebook is also a great place to join SMA groups both locally and internationally to get knowledge from parents and caregivers who gone through similar situations.
You can also contact other SMA families who can give you advice, support or just be a sounding board for you to vent you frustrations. They know what you are going through .