An early birthday present!

We took Riley to the University of Florida Pediatric Neurology Clinic yesterday to seek a second opinion & some more answers. . . We could not have had a better visit! We were at some what of a dead end with our previous neurologist and we have been praying for quite some time now to find someone who stays well informed on the latest research and who is up for the challenge of diagnosing for our apparently impossible to diagnose daughter. We meet with Dr. Carney yesterday and we were very impressed with his knowledge of the latest research and treatment options for kids like Riley. We discussed literally every test, plan, question, etc. I had hoped to discuss - and he had answers! As we discussed Riley's previous diagnosis and prognosis, Dr. Carney was very clear that it is almost impossible for them to put a time line on how long they think a child like Riley will be able to survive (there are just way to many factors that come into play with her condition) but he told us "optimistically yet very realistically" she could in fact live a full life, attend college, etc. more than likely from the confines of a wheel chair but still alive! I was fighting back the tears at that point - for a doctor to be talking about Riley going to college when previously all we had heard is that we would be lucky to enjoy a year or two with her, I was just over whelmed! He asked us to come back soon for some more testing but as we were going to check out his assistant stopped us and said there was an immediate opening to have one of the test done right then. Now I don't know how much experience you have with medical specialty clinics but they have some of the most overbooked schedules imaginable so that fact that they we able to fit us in right then was beyond serendipitous. They performed an nerve conduction study and an EMG (tests to determine if the issue is with her nerves vs. her muscles, or both). So we started to drive home glad for the great visit and looking forward to getting the test results but we only made it to about a block away and then got a phone call to come back that Dr. Carney wanted to see us again immediately and go over the test results in person (again, completely unheard of in medical specialist land!) The tests found that her issues are mostly muscular - which is HUGE! Muscular diseases are much more manageable and treatable than anything that effects the spinal cord or nervous system. It is SO great to be able to hear her doctor confidently say that her condition is not something along the lines of a Spinal Muscular Atrophy but instead it is more than likely in the family of Congenital Myopothies (a category of muscular diseases that are present from birth). We could not have been more pleased to have started such a great medical relationship with her new doctor, gotten such good news, and to have gotten some much needed answers. It was one of those days where you just kinda giggle on the inside at the perfection of the moment and the realization that was an obvious answer to prayer. We are so happy to be celebrating her first birthday tomorrow with a new found hope for what the next year (and all the years after that!) will have in store. Thanks so much for all your prayers, love, and support. We will (GLADLY!) keep you updated as we learn more about our precious daughter's condition and how to help her.

Much Love,
The Turner Family
(Josh, Becca, Ayden, & RILEY!)