We have had a really hard time getting on-line for the past week. The latest update let you know that Jameson had not been sleeping very well. Well, for the past two night he has slept much better. Praise the Lord!!!! He has started to eat a little better. He gets so tired just reproducing skin, that eating is very hard for him. It will take 1 hour and a half just to get him to eat 3 oz. Our goal is 4 oz. per feeding. We spoke with a nutritionist and he is now on a 27 calorie diet. That seems like very little but it is enough to help him gain weight. He has yet to make it back to his birth weight. Needless to say, our day is changing diapers, feeding Jameson and changing his bandages.
I spoke with the pediatric surgeon today and we are trying to get Jameson into surgery next week. Dr. Miller, the Dr. that will be performing the surgery, is amazing. He has already spoken with the specialist in Cinn. about Jameson and has consulted with them as to the best way to treat him. There is also an anesthesiologist in Orlando that is from Cinn. Children's Hosp. that is familiar with and has done work on EB patients and Dr. Miller is trying to schedule the surgery around his schedule. We stand in awe of God's hand in all of this and working out the details of Jameson's surgery. Our little boy is so in the hands of a loving Savior that cares for him more than we do. How can we ever doubt His goodness to us?
The Lord gave me a song just after Jameson was born that Has greatly comforted me. It is a kids song but it shouts out the truth of God's word... "My God is so BIG, so Strong and so Mighty there is Nothing my God cannot do for you." We are trusting in a Big God to do Big things for Jameson. We ask for a miracle and complete healing. We ask this knowing that God's will is our desire. As a great friend prayed, "We would be selling God short if we did not ask for complete healing". So please continue to pray for Jameson and God's will to be done in his life.