I have had many, many hard conversations with Jesus within the last week. He has heard my fears, caught my tears (I did not mean to make a rhyme), and listened to my ANGRY outbursts. I cannot begin to explain to you how hard this disease is to handle. I am very tired and I know that tomorrow I will do it all over again. Please know, I am not complaining. I am living a life that I never thought I would be living. I am learning to live different. I asked the Lord yesterday,"Where are YOU in answering my prayers?". Am I being told YES, NO or WAIT? He said Yes and WAIT. Today, we got the biopsy results. We have a the most severe form of Simplex. PRAISE THE LORD! I asked the Lord if He was not going to heal Jameson right now that He would give us the most simple form of this disease. He answered my prayers (and the prayers of MANY other people as well). You can goggle Dowling-Meara Simplex and find out exactly what we have. But the good news of this diagnosis is between early to late childhood we can grow out of EB. This is Jesus' answer to WAIT. He can choose to heal Jameson tomorrow or 5 years from now.... As it was before the diagnosis, it is ALL in His time and in His hand. We are truly thankful for this amazing news. I praise the Lord for this outcome. He always shows up right when I need Him. He is never a second too early or a second too late.
I think that we have beat the infection without going to the hospital. YIPPEE!!!!! That makes me super happy. We also went to the Dr. today and Jameson weighs 9lbs and 7oz. He has gained 1lb and 5oz in 3 weeks. That is amazing!! Typically, EB babies have a hard time gaining weight but thank the Lord, Jameson is doing GREAT!!! We did get a bit of news you guys can pray for. The Dr found a heart murmur and we need to have a eco-cardiogram. He said that he is being over cautious with Jameson but that he needed to be this cautious because of the disease. A murmur to a normal child may not be a big deal but to an EB baby it presents just another complication. If he has a defect in his heart that is causing the murmur,and if Jameson get an infection ,this infection, could cause his heart to become infected. So...off we go to another Dr. Please pray that this murmur is NOTHING. Also, we need to know if Jameson is anemic because this could cause a heart murmur as well. So, he will need to have blood taken sometime this week.
I feel like I have told you guys a ton of stuff. Thanks for taking the time to keep up with us....it means so much knowing that you are praying for Jameson and our family!!!! We love you all.