More testing

I don't know how to express my feelings right now. What a journey this has been. There are days where our new normal seems so normal and there are days where I am grasping at things to make our life "normal". It seams to go in waves with doctor appointments and testing. On Friday I took Easton to a new Neurologist. Dr Sakaunju at the University of Utah. She specializes in nerves. Clear back in November most of Eastons doctors thought he would gain better muscle control start to out grow some of these things he struggles with. Doctors left and right have been shocked that he hasn't been making progress on his eating. We have been struggling with this because his muscle tone has improved a lot. They told us his eating should along with it. It hasn't. We are starting to try and feed him again by mouth and are hoping that he can tolerate the pudding consistency. (the thicker the food, the easier it is supposed to go down.) Because of the decline in his ability to swallow with the increase of muscle tone, they are becoming more convinced it has to do with the nerve. So, on Friday we met with Dr Sakaunju and she agrees. She felt like his muscle tone was good and has nothing to do with his eating. She feels that this is a nerve problem. She feels like it is most likely a "Degerative Nerve Disease/disorder." There are several syndromes that go along with something like this. She gave us paperwork for one they will test for. It is called "Brown Vialetto Van Larea Syndrome." I have to make this clear that he has NOT been diagnosed with this. We are however going to start the process of testing for it. Once approved by our innsurance we will to a test where they put him out, shock him over and over and watch what his muscles and nerves do. They will then do a muscle biopsy and if they are positive they will do blood work to confirm their findings. The prognosis of this specific syndrome is not good. The most frustrating part is that this fits him better than anything we have ever seen and she seamed very confident in her findings. People who get this syndrome usually pass away from respiratory failure. We are praying this is not what Easton has. Not one doctor has been able to put the pieces together like she has tho. It scares us. No one has been able to put together his hearing loss with anything else. This does. We are praying this is not the answer. Please pray along with us. If you go to your local temple, please add his name to the prayer roll if you don't mind. I cannot explain how it feels to have the doctors testing you baby for this. There are no words. But, never in my life have I had more faith in our Heavenly Fathers plan for us. He truly has a plan for each of us and Eastons plan will be carried out the way that it needs to be for him. I know he chose this trial and I know that we chose to be his parents and love and take care of him. I am so grateful for that and I wouldn't change it for the world. This whole process has been a challenge, but the hard moments are outweighed by so much joy, the sweetest little giggle and a smile that will melt your heart. For that, we are so very thankful. Easton is such a joy to have in our home and brings a spirit that I can't explain. We are so blessed and sure do love this sweet little angel! We will update here as we get more information.