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I received a call from the FA Clinic in Cincinnati yesterday to discuss the preliminary numbers that came back on the other two bone marrow tests. Both of them cam back within the normal limits and the correct cell growth was noted. We did not expect to see anything different and the doctors themselves have not reviewed these reports so that is why they are considered unofficial. We will continue to do these test yearly to help identify if/when Bone Marrow Transplant is soon approaching. This is great news to get!
Elias also had a post surgery follow up visit yesterday. Both surgeons were pleased with his progress and healing. The catheter stint was removed and Elias was not at all happy about that, as I can well imagine. We finally had the chance to talk with them about our move. While they were sad to see Elias go they agreed this was a great opportunity. His main surgeon, Dr. Stewart wants us to let him know when Elias pull-thru (repairing the imperforate anus) surgery is out there. He wants to fly out and observe the surgery as Dr. Pena and Dr. Levitt are the pioneers for this procedure. We will certainly welcome that! He has been with us literally from day 1 of Elias life. He has saved Elias’ life several times and with one exception the only person to perform surgery on Elias. We are grateful to him, his skills, and his friendship. We will certainly miss dealing with him, but hopefully he will visit soon during the Pull-thru.
Finally, the packing is proceeding well. We are almost done with that, thank god. Things are coming together on both ends for loading and unloading. Thank you to everyone that has volunteered, sent gifts and other items to help with the move. They are all truly appreciated more than we can ever express. We are looking forward to this time next week. We will have spent our first night in our new home and begin a new chapter for Elias. One that we feel is very bright and full of hope regardless of what his FA brings. He will be in a place where devoted medical professionals to Fanconi Anemia will help to improve his quality of life as well as preserve it, giving him a greater chance for survival. It is amazing to arrive at a place where faith has led you. While it is still a bit unsettling and many unknowns remain, we believe in our hearts this is what is best for Elias and we feel he will show us all how right we are as he continues to thrive, develop, conquer and overcome his remaining obstacles. That is what gives us peace and confidence to move forward.
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