One important thing parents can do for themselves and for their child is to organize the information they are gathering. It is very helpful to have complete medical records for all the doctors who are treating a child.9
It might help to organize everything in a notebook or in a file box so it can be carried to appointments with doctors and other service providers.
In some communities outside, medical providers are starting to have everything put into a digital format so parents can carry it on a small portable drive. There are still some things to work out, for example, how to keep the information safe. Parents in Alaska might start seeing something like this.