Merry Christmas! We are sorry it's been since Thanksgiving since we updated all of you. Please forgive us.
Jameson is doing well. In so many ways he's the same as he has been all along. In other ways he is progressing a little bit. Let's start with the progressing part, it's more uplifting. Yesterday he gave us kisses!!! Remember when your kids were babies and they kissed with open mouths? It was a milestone passed. I said to Melisa last night at dinner that, "we spend so much time taking care of Jameson that it seems that we forget to enjoy him and teach him the little things like giving five and giving kisses". It was awesome to see him smiling from ear to ear. He is also wanting to sit up. When we are holding him on his pillow he tries his hardest to do a sit-up and get out of his laying down position. He's so alert and wants to see everything that's going on around him. We have started to sit him up on the sofa with one of those horse-shoe pillows around him. He's doing great.
As for the "same" part, his skin has not improved. He's still blistering each and every day. We are still bandaging his entire body each and every day - no days off. He doesn't even give us the major holidays off :) His hands and feet still pose the biggest problems. They blister and callous daily. When we finally get some of the thick nasty skin off we are so excited until the next day and there is nothing but blisters. It seems like a never ending process. Jameson is still not eating well either. He's just reached 12 pounds soaking wet. He's not even close to being on the percentile chart and that is causing some concern. Last, he is having some respiratory and breathing issues and we are giving him albuterol breathing treatment's 3 to 4 times a day. Have you ever tried to hit a moving target? Try holding a mask up to a babies face while he's squirming all around. We aren't able to put the mask directly on on his skin because it would blister him, so just picture us holding the mask to his nose and mouth without it touching him. IT'S A REAL SIGHT (you should be laughing out loud right now). We have hope though!!! We know 2 things that keep us going fervently each and every day. 1. Jameson is God's baby and he is so loved by the Creator of the heavens and earth. God is holding baby Jameson and has an incredible plan for him. 2. We have the hope that Jameson's skin will repair itself at some point. We don't know the timing of this, whether it will be 2, 3, or 4 years from know, but according to the diagnosis we have that hope.
We went and saw a nutritionist yesterday and she shared with us some encouraging news. She is suppose to be the best in Orlando and she agreed to come to the office yesterday even though she is on vacation. We will meet with her next week after she does her research on EB. We will let you know what we find out.
Please pray for Melisa as you are praying for Jameson. Some days are so hard for her. She's a wonderfully strong woman, yet some days really get her down. Thank you for all your concern and love for her.
Have a Merry Christmas. We love you all.