Hi Gail. I just wanted to see how you were doing. I remember how tough the first year can be.
I myself, went through such a period of guilt. I kept blaming myself. What did I do wrong? What could I have done differently? You spend nine months doing everything you were supposed to do. You eat right, you stop all "bad" habits if you have any. You feel gulity if you have that glass of soda. All the prenatal tests say everything is wonderful. You dream of that baby every night. Then when they are here, you have to deal with a Vascular issue. What makes it worse is that so many doctors are not fully educated about PWS and the medical issues. You still love that baby with every ounce of your being but you cry for the unknown and you cry for what they have to endure, laser treatments, eye doctor visits, tests, neuro visits.
I will tell you that the first year was the hardest. It does get easier. Now three years later, I still have my good days and my bad days. Every time I see her pws I get sad for a moment but NOT because of the cosmetic aspect-I get sad because of what it can represent-possible Glaucoma issues etc. Cosmetically, I can deal-- it is the unknown- the waiting is what is so hard for me.
I think that being in the medical field myself has made it easier in some ways and harder in other ways.However, that is just me.
Try to vent if you need to. Some people need to talk while others feel better not talking. Do what is right for you. There is no wrong or right. You know how much you love your baby and you are doing everything you can for him. That is what counts.
Learn and read all you can. Become a sponge and soak up all you can about Vascular Malformations. Then you will able to make informed decisions for your little one.
Best of luck and we are here if you need us.