Life Is Good!

Feeling very humbled. Easter took on a whole new meaning for me this year. I really enjoyed our lesson in YW and really thought a lot about our sweet little boy. What a blessing it will be for all of us to be perfected someday. I am very grateful to know that Easton too will be made whole and that all of his physical struggles will someday be gone. I hope they will be gone sooner than later, but to know that someday he will not have to struggle at all physically bring such a peace to our hearts. I love to know that someday he will be able to hear just like the rest of us. I am grateful for the strength the gospel brings into our lives. I have some news that makes for a wonderful post! To start off with, Easton is getting so much stronger. Lately he can sit for longer periods of time. It is so nice to see! On another happy note, Easton now longer has a cannula! He was pulling it out all the time and I was so worried he was going to choke himself with it, so they have put him on a blow by which just blows it into his face at a higher concentration. It is so nice to not have that on his face! On Friday I did face time (Thank goodness for technology... again!) with a mom of a little girl with BVVL who lives in England. Her daughter is 7 and started having symptoms with it when she was 2.5 and it took them three years to diagnose her. She told me of many stories and said Easton sounded a little different for two reasons. He was born with problems and his hearing is severe to profound in one ear with no hearing loss in the other. They usually loose it together although one can be worse... just not that big of a difference. She explained that all the cases are different though. She gave my information to a neurologist from Canada whose daughter has the same thing. He called about 10 min after I got off with her. It was so good to talk with him. He answered so many questions and put many fears at ease. His daughter is almost 3 and they found it a year and a half ago. He talked to me about the vitamin treatments they do and how effective they have been. He said any older information past 2010 we can disregard because people are doing really well with the treatment. They have only seen good since. It has helped many kids be able to improve and they haven't seen any regression since using the treatment. He said getting an early diagnosis is vital though because they cannot regain everything they have lost, like eastons hearing loss. His daughter is doing well tho. He said all the cases are so different and agreed with the hearing loss part but definitely thought it is nerve related. The treatment can help with other nerve problems to if vitamin B is the issue. It was very reassuring, even though it doesn't take away all the concerns we have. Later that day his Neurologist office called and they are in the process of getting the testing approved for him. We will hopefully be doing it within a month and are continuously praying for good news that day. Thanks again for all your continued prayers, love and support!