Back from my trip to San Antonio!! It was a good trip and I got to spend a lot of time with lil William! He is five and a half months now, so big and such a cutie pie. I spent three days there and most of the time was spent indoors. It is very hot there right now but should start to cool down soon. He loves to be outdoors and look at the trees and the sky.
He was sleeping when I arrived and woke up with the biggest smile on his face, he was so happy to have a new funny face to look at! He gets very excited and does a lot of kicking and trying to grab things with his little wrapped up fingers. He cannot roll over yet and is not too fond of being on his tummy. We did some tummy time and he made it very clear that it was not ok with him! They visited his dermatologist the day before and everything is looking good at this time. There are no major infections nor any complications.
As of right now they are doing bandage changes every other day. I was able to help with this one and it took a total of four hours. That is the biggest obstacle they are dealing with right now. The amount of time and care that he needs is hard to comprehend. What is even more amazing is to see how Anim handles the situation and manages the day-to-day tasks. She is truly amazing! After only three days I felt as though she just had a normal healthy baby that she was caring for. That is because she has so much patience, and if there is any stress she hides it very well. Williams’s favorite thing is Music!!! Bill (William’s nickname, which I protested ha!) would be crying hysterically, then as soon as Grandpa pulled out the guitar and started playing, he would instantly stop and be glued to the strings. He is very alert and seems more aware of his surroundings then your average “normal baby” of that age.
Our biggest concern and hope, is that his eyes stay protected and that his mouth heals. You can tell that it’s painful to eat, but he eats well in spite of it. His eyes are the same as his skin and can blister easily which can ultimately cause blindness. He has to be allowed to do normal activities that a developing baby would do such as suck on his fingers, grab things and be unrestricted in his movements. If not, it would hinder his development which is very important for his future. Finding the proper balance is a constant. I was sad to leave but happy to see things were going so well. I took some pictures and a short video of Anim for the Butterfly Ball this coming weekend. The event is in Sonoma and the beneficiary is William and another darling little boy named Garrett who also has EB. Can’t wait. Love you William, miss you already!