Thursday Update

Just a quick update on how things are going here.

Tuesday we went to the eye doctor for the first time since he saw Ellie in the hospital. We really had no concern about her sight, but I was still really nervous to hear what he had to say. After all, I had thought that she was hearing and was wrong about that!

While we were waiting to see the doctor, and let me tell you, we waited a long time, I worked myself up deciding he was going to tell us that Ellie was blind and would be a vegetable for the rest of her life. But, the first thing that he did say was "I can tell you that she sees perfectly fine" and I nearly burst into tears. He actually said that despite her severe hypotonia in the rest of her body, her eyes move quite well and seem pretty normal!

The rest of the appointment was quite interesting, as he appeared to be quite interested in getting Ellie a diagnosis. He has seen a lot of people with neuromuscular disorders, so he had some insights as to how the eyes relate to those disorders. He first thought we were dealing with a rare disorder called Mobius, but then said that he had never seen a case where they had lateral eye movement, which Ellie does very well. Then he mentioned the muscular dystrophy diseases, though they tend to have cataracts, which Ellie does not. He was able to look deep into Ellie's eye and see her cranial nerves, (which we thought was really cool), and he thought there might be something going on with her "gray matter" of her brain, so he thought another MRI was needed.

Now that I have thoroughly confused both you with all these diseases, I will sum it up to say that he really wants to pursue more testing, both in the form of another MRI, and possibly going to another hospital, the Cleveland Clinic, to do more tests.

I had mixed feelings after he mentioned more testing at another hospital: first, anger that no other doctors had even mentioned that there were more tests and specialists out there that might be able to help Ellie. I also started to worry about invasive tests and possible negative diagnoses. But then I also started to get excited that we may someday know what is wrong with Ellie and be able to find more effective ways to help her and also plan for the future.

Ellie is having a great week. Starting Saturday, after I posted that she was so sleepy again, she started to have great awake periods during the day. In fact, she is awake for most of the day except for a few naps. It has been really exciting, and I am feeling better because of it. Thank you for your prayers.

We received some of the money from Adam's cousin Jen for the fundraiser. We are so overwhelmed and thankful for this blessing! Thank you all so much for your support and love of Ellie. You are making a difference in her life! Praise God for his blessings!

Love,
Emily