Normal is such a relative term....and it is at this point in our lives that EB is becoming normal. It is OK to have a baby with EB. I have somewhat come to terms with the day in and day out routine of living with this disease. Better yet, I am loving an amazing baby. He brings to my life amazing joy and fulfillment ( worries and fears as well). Jameson is the baby that Todd and I prayed for. We were sorta' skeptical of having another child. I had been challenged by a wonderful friend to get up early (5:30 a.m. to be exact) and spend time with the Lord. I took the challenge and I was very blessed by what God had to say to me. The Lord kept taking me to scriptures about having another baby. I told the Lord "NO, I don't think that is what we should do" and again the Lord consistently over many days made it very clear to me. I told Todd and he was not opposed to the idea that we should have another baby. Well......first try and we were pregnant with Jameson. I was SHOCKED!!!!!! Truly, we were meant to have a baby!!!!!! I am so happy that Todd and I were obedient. I know that God had to make this whole experience point directly back to Him. Otherwise, I really could not have handle what we have been going through. God asked Todd and I to have this baby. We said yes and now we have Jameson. We feel so privileged to be chosen by God to walk this road. As hard as it is!!!!!!!! It is gratifying every step of the way. It is so true what God says...He will never give you more than you can handle. Even when I tell Him it is too much. He reminds me, without His strength, I cannot do it, but with Him I have the ability to manage all of this and glorify Jesus through it. I often wonder why I say so much. You did not need to know all of that but I just felt led to tell ya'.
Jameson is still having A LOT of blisters on his back and belly!!!!!! Please pray for complete healing. His little legs and arms have not ever looked so GREAT!!!! His ankles and feet and hands are improving. Thanks for all of your prayers, they are being answered!!!!!!!