I hope everyone had a very Merry Christmas and a Happy New Year!
We had a wonderful Christmas. Alex was so happy. We barely saw him for 2 days as he stayed in his play room enjoying all his new stuff. Santa was very good to all of us. The nicest gift was watching Alex and my Dad enjoy each others company. The last two times we have been with Grandpa, Alex has really loved being with him. It is so nice to see.
I got a beautiful new digital slr camera, so look out you could be bombarded with new pictures of my lovebug!
The last couple weeks have been a real rollercoaster of emotions. Between trying to get the stroller and waiting to hear from Cincinnati, my patience has definitely been tried. Things are really staring to look up though. After much pursuing it looks like the stroller is before the review board right now and we should know something in the next week to 10 days. Then it will take about 2 weeks to get the stroller once the order is placed. I also heard from the neurology department at Cincinnati (finally)! They are still waiting on the DNA tests to come back. They do not want to make a commitment to doing the muscle biopsy without seeing the DNA results. Reason being that if the DNA test is positive we won't need to do the muscle biopsy. The nurse was working on tracking down the results and then will get back with me. The bloodwork that they do have back all points to a metabolic/mitochondrial disorder. So at least we know we may be close to finally having some answers.
Another positive...through some parents online, I got the name of a mitochondrial specialist in Houston who is supposedly WONDERFUL. The parents have all been raving about her. It will be really nice to have someone within driving distance to walk us through this. She is also great about communicating by phone and email. We will still use Dr. Putnam for our GI stuff in Cincinnati, but we are hoping to only have to travel once or twice a year. As I learn more I will continue to update.
Thank you for the blessing you all are in our lives.
Love always,
Ali
Alex and Maddy
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