We just went to the doctor for Jameson's 4 month check-up. Dr. Coffman was very impressed with Jameson's personality. He would smile and try to talk to the doctor. It was cute. Jameson passed almost all of the 4 month milestones. He can track and follow you with his eyes and smile. Jameson can (with help reach for things), but he can not roll over. Dr. Coffman was not surprised. Jameson has only been on his belly one time and it was not a pleasant thing to do. He did not like it at all. So...we cannot roll over yet. From my understanding this is an OK delay because of our EB. I have come to realize that we will be delayed in many areas, but we will catch up with time. When Jameson is 6 months old (depending on his skin), we will start physical therapy. I have stopped wrapping his hands and he still gets blisters but I believe that him moving his fingers are more important than the blisters right now. Anyway his hands blister even when they are wrapped so.......Jameson will hold onto our finger now, where as, before he could not even feel if your finger was in his hand. I truly hope and pray that I am not causing damage or even pain to him. I don't think he cares. I am just happy that he is using his hands and fingers little more.
At the doctors appointment, we were told that we could start solid food. Well, that is exciting for a baby without EB, but a baby with EB...NEEDLESS to say I was really nervous. I thought, what if I blister his little lips or what if the food blisters his mouth or what if he has an allergic reaction? Jameson did well, none of the above has happened. He was not very interested in the cereal but he has eaten a little each time. We need to get him eating more because Dr. Coffman was a LITTLE concerned about his weight. Jameson is 4 months old and only weighs 11 pounds. He is not on the growth curve at all. Which means he is not even in the 5th percentile of his weight and height. Dr. Coffman said that he would like to see Jameson 6-7 ounces heavier and 1 inch longer. That would put him on the chart. So.. please pray for his growth. I have been told that the nutrition that we take in first goes to healing the body, then growing and then gaining weight. I really believe that Jameson has to work so hard just to produce skin that he is always behind on growing and gaining weight. It makes sense...over 80% of his body is blistered.
Nicholas and Zachary have just realized that Jameson has changed our lives. They have made many comments about my ability to spend time with them. WOW!!!! That was really hard to hear. I told them that I understood and then went into the bedroom and cried. It is hard enough to live with the daily life of an EB child but when your other babies are struggling....well that is too much!!!!! There are some days that I don't even have the strength to deal with my own emotion, and then to handle other's struggles......it is VERY overwhelming!!! I try to remember that our diagnosis was the best diagnosis. I try to remember that this is only for a season. And I try to remember that there are others with worse conditions than us. But, I am tired and selfish. I want what I want and God is not doing enough. How stupid of me to say!!!! Honesty is something that I don't struggle with. God knows my heart and bottles my tears. He understands my emotions and still loves me all the same. I love knowing my position in Christ...unconditionally loved and there is no judgement in his relationship with me. The ups and downs of life, I know, are hard for many. My only advice would be, to myself, and to you- is take it to Jesus. Anything and Everything!!!!! He wants to hear it all. Just think about how much we want to hear from our children...He wants to hear from us as well!!!!
Love you all,