We have now been out of the hospital for over 5 weeks. WOW!!! I thought that would never happen. I think, early on, we were in the hospital every 7-10 days for the first 6 weeks of Jameson's life.
Jameson is doing OK. We are still getting alot of blisters everywhere. He is even getting them around his mouth and inside of his mouth. He is still eating OK. Jameson has not increased his caloric intake; he is still just taking the same amount of formula as he was at 3-4 weeks old. That concerns me a little. I would love to see him eating more (prayer request). I will be taking Jameson to the Dr. on Thursday just to see if he is gaining weight. I have not taken Jameson back for the Eco-cardiogram. I will see if there is still a need for us going when we see the doctor on Thursday.
I am still changing Jameson's bandages daily. Some people have said that maybe we could go every other day.....but I am a chicken. The last time we went every other day, we were in the hospital within 5 days. He just seems so much happier when his bandages are clean. I would too if I were him.
I often wonder if tomorrow will be the day that God chooses to heal Jameson. I have to say, there are many days when I am really impatient (like today). I often want this disease to be over and to have a baby with amazing skin. His skin is improving, but just not as fast as I would like. I am learning to be content (but not always happy though). I am still thankful for God's answer to me awhile ago. WAIT!!!! I feel like a child some days...stomping my feet at God and saying I want this NOW. I have a long ways to go but I am still running the race. In the end, my desire is to glorify Jesus and grow closer to Him. "To God be the glory GREAT things He has done".