A Plan...

Our appointment went well today. I could feel the presence of the Lord there, especially since we only had to wait for 10 minutes to see the doctor! The plan as of now is to get Noel to the Nationwide Children's Hospital in Columbus, Ohio. Unfortunately, the G.I. Clinic there is booked for three months out, so we will start the process of getting her appointment there. The reason she will be going to this hospital is that they specialize in motility disorders, specifically Noel's diagnosis: Chronic Intestinal Pseudo-obstruction (FYI if you click on the blue words it will take you to a link that defines them). Once she's there she will undergo lots of tests and procedures, we will see if she is a candidate for an gastric pacemaker (much like a heart pacemaker, but it stimulates the intestines). Worst case scenario is that she's not a candidate and we have to start to consider even tougher decisions like a possible bowel transplant. That will be a very hard decision and we would cross that bridge when we came to it. The doctor gave us some medicine to help Noel's nausea and to help with the pain associated with her stomach. Sometime next week Noel will undergo a scan of her gallbladder, we need to rule it out having any involvement in her stomach problems. Dr. K said today best case scenario we find out her gallbladder is the problem then she would undergo surgery to have it removed and her problems would be solved. The doctor is not very hopeful that her gallbladder is the problem; we just need to rule it out. However, her underlying condition, Myotubular Myopathy (her form of muscular dystrophy) usually has an effect on the gallbladder so there is chance that it's the problem. We should have those answers next week. Other than the "normal" (completely not normal, extremely hard, overwhelming job of taking care of Noel) we will prepare to somehow get a medically fragile child 1,116 miles, with all of her machines and equipment to be seen by specialists in Ohio. The thought of just taking her to church some nights is daunting so we'll need God's provision and strength, I believe though that God will go beyond, beyond what I could ever imagine is possible. Thank you so much for all your prayers and for all the wonderful friends who've been such a blessing! I know many people want to know how they can help and I'm trying to get a list together of things that would be helpful so anyone who wants to help can. I'm so blessed by an amazing church family who has really shown their love to us! I love you all so much! Thank you too to our wonderful families who support and love is amazing and thank you to so many special friends who make this hard journey more bearable. Tina