Well my in laws left today and although there were more headaches then anything we all cried a bunch. It is so hard to be so far away from family and friends when going through something stressful like this. However, i count my blessings every day that my son does not have something worse then this.
My mother in law pointed out to me a few times that for as many things that have gone wrong, Nolan has handled everything very very well. He is the best baby when it comes to being strong and just handling every situation. He did not cry when or fight anyone when he had to have drops at the eye doctor, during his shots he just cries for a split second and then its over. I keep telling his doctors who are always shocked at how well he does that he has gone through so much that these other things are nothing compared to what he goes through daily with the helmet.
The helmet is officially trimmed as much as possible in the front where he has skin breakdown, which is basically where the helmet rubs and it leaves a red mark. They dont want it to get worse so then it does not leave any permanant marks or rashes. She said his head is still perfect. The therapist said his propped sitting is definately mastered and now we are on to trying something new.