WOW! Jameson is 19 weeks old

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,
Melisa

cardiologist

We saw the cardiologist yesterday and did not need the eco-cardiogram. Praise the Lord!!!! The doctor told us that we do have a slight murmur and that she wants to see us again in 3 months. I was very impressed with the office and how they were very accommodating to us. Everything went soooo smoothly. God ALWAYS goes before us and makes our paths as bump free as He chooses. I stand amazed at my Lord and Savior and His care for us and Jameson!!!!

People are always asking how is Jameson doing....I find that question really hard to answer. He is improving. Since birth, he has new skin on his ankles and knees. Jameson continues to blister and his skin is very red and hot. I see him everyday and it is hard to see the improvement. But when friends and family come over every other week or so they see his skin improving. Their encouragement is such a blessing!!!! If there is one area that I would like to see the most improvement is would be his little hands. His feet are looking better but have a ways to go. Please pray that his little hands and feet stop blistering and improve.

OH!!! Jameson is gaining weight and thriving. Thanks for praying for his weight gain. Jameson is smiling and cooing (spelling? making baby noises). He is such a great little guy and I cannot wait for him to meet you all!!!!

Love,
Melisa

Getting much better

I think we are getting better. Jameson's cough is MUCH better and he does not have a stuff nose anymore. We are so thankful this cold did not take us to the hospital. I am also very thankful for our pediatrician. Dr. Coffman was off on Wed. and he personally called to get us in the office with the exact doctor that he wanted us to see. He is so over cautious with Jameson and that makes me happy. He will see us for any reason.....even if I am just being paranoid! Dr. Coffman asked if I was as up tight with the other boys as I am with Jameson. I said NO!!!!! The other boys have healthy skin and Jameson doesn't. I told him I have every reason in the world to be paranoid....he laughed and agreed.

Halloween was fun. It was not cool enough to take Jameson with us; plus, he was sitll getting over his cold. He stayed at home with my mom and dad. The boys did go as mummies. They had a great time. Todd and I had to bandage them....WOW...what a job. I think they have a greater appreciation for what Jameson has to go through everyday. It took forever to wrap them. Oh!! Just for those who may want to wrap their kids as mummies next year remember they may need to go to the bathroom. We had to learn the hard way.....unwrap and then wrap again.

I was talking to another Eb mom and she gave us some great advice. Other mom's of Eb babies really are soooo helpful. I have such a fear doing anything different with Jameson. I want to wrap him the same, hold him the same, and really not change anything but his diaper. This wonderful mom told me that doing things different is good. She told us it is sorta like a risk-reward thing. If you don't take the risk to do something different then you will never know if something else may work better. Well.....I did not wrap Jameson's arms on Friday. I put this other clothe-like material on him. He did still blister but not anything like I thought he might. I was just proud that I did something different. On Saturday, I did wrap his arms like normal but I believe that I am learning to trust and not fear the unknown. I was praying today and expressing my anxieties with Jesus. I was encouraged by the peace that I felt. The Lord made it clear to me that I needed to find joy in the little triumphs right now. I need to find Jesus in even the little things (like wrapping him differently). I am always asking Jesus for the BIG answers to pray....when really Jesus is all over answering the little things and I just needed a little reminder. I will find joy in the little triumphs in life!!!!

Thanks for praying for Jameson. I do believe your prayers kept us out of the hospital. We are thankful for each one of you!!!!

Love,
Melisa