Update on Ethan
It has been a while since we've posted anything about Ethan's medical situation, mostly because last year was really difficult for all three of us and we decided to take a much-needed break from all the tests and doctor appointments...knowing that the day would come when we would have to deal with them again. Unfortunately, that day came yesterday.
Since November, we knew his April neurogenetics appointment was coming. We tried not to think about it and just focused on helping him improve. His three therapists (who each see him every week) continued to teach us how to incorporate his therapy into our every-day life. His fine and gross motor skills continued to slowly improve and we have seen huge progress with his vision! We saw his pediatrician last week for his 1-year check-up and, though he still expressed concern over his delays, he seemed pretty positive (especially about Ethan's social skills).
So, we arrived at his neurogenetics appointment yesterday feeling pretty good and thinking they were just going to send us home saying, "no need to come back for a long time." We should have known better, but because we have invested so much and see every day how hard he works, we always go into these appointments very postive. I don't know if it would be possible to do it any other way. WE see all his improvements and THE DOCTORS are trained to see all the "problems." Though they were in agreement that Ethan has definitely improved, they are still concerned about his development and (what caught me off guard the most) his vision. They ordered another brain MRI, an MRS (like an MRI, but measures the chemicals in his brain) and some other blood tests. We thought that since his MRI came back normal last time, we wouldn't have to do it again, but they informed us that the brain is always changing and we need to see what it looks like now. It hit us pretty hard, realizing this is not going to end any time soon. So, after the appointment we felt a little like this...
We came home and talked about how we were feeling and cried and said "this just isn't fair." And then we loved on Ethan and reminded ourselves what a wonderful boy he is and how much joy he brings to others. Wherever we go, he is always smiling at strangers and making them laugh. And, though the pain isn't gone, he makes us forget about it.
Then some friends (THANKS TRACY AND MARY!) came over to stay with Ethan while he slept so we could go out to dinner (and, of course for ice cream afterwards). Tracy and Mary have been coming over to spend time with me (Terre) and Ethan every week for at least the last seven months. They have been such an encouragement by just listening to me and really loving Ethan. They sit through therapy sessions, play with Ethan while I shower, spend time with us at the hospital and are just present when I need them most. They really are wonderful! Anyway, thanks to their offer to stay with Ethan, after our night out we felt more like this...
So, for those of you who have been asking for an update - thanks for your patience. For those of you who just stopped by for a few pictures and got a little more information than you wanted, thanks for reading anyway. And for all of you, please continue to pray for Ethan's progress. Please pray for his blood tests (we really hope they don't have as much trouble getting blood as they have in the past - this is so traumatic for all involved) and MRI/MRS to come back normal. We don't know the date for his MRI/MRS (sometime in the next three weeks), but we are really hoping for another smooth sedation experience. Thanks for your prayers and kind thoughts for our little boy.
