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.

There's a First Time for Everything

For the first 8 months of Ethan's life, he only slept in our arms or the carseat (but, for some reason, not when the carseat was in the car). For the past four months he would only sleep in his bed (which is a good thing, except for when you need to go somewhere or make a long-distance trip...then it is extremely frustrating!). Even though we were determined to have a child that could adjust to our busy lifestyle and sleep anywhere, that just didn't happen. Not only has he been pretty picky about where he sleeps, but because of his sensory issues he also has to have a very dark and quiet space to sleep. That is...until today. Today, as I was talking on the phone with a friend and swinging Ethan in his swing, I look up to see that (in the midst of lots of loud street noises - beeping horns, school buses across the street, etc.) ETHAN WAS SLEEPING IN HIS SWING! And not just dozing on and off, but SNORING! Though this may seem like no big deal to parents of children who sleep just about anywhere, this was a minor miracle for us! And a big accomplishment for him in overcoming some sensory issues to be able to do that. I was so amazed I called Tim and he came home from work just to see it.

The Swing

By Robert Louis Stevenson

How do you like to go up in a swing,

Up in the air so blue?

Oh, I do think it the pleasantest thing,

Ever a child can do!

Up in the air and over the wall,

Till I can see so wide,

River and trees and cattle and all

Over the countryside--

Till I look down on the garden green,

Down on the roof so brown--

Up in the air I go flying again,

Up in the air and down!

Birthday in the Park

Ethan loves being outside, so we brought him to Cherokee Park (after a stop at Homemade Ice Cream and Pie Kitchen - he takes after both of us and loves ice cream as well) to play in the grass and go for a walk on his birthday. We were so thankful for the nice weather and had a great time playing outside!

A Year Ago Today...

our world became a better place.

Ethan's First Easter

This past Saturday Ethan's therapy playgroup had a little party where he got his picture taken with the Easter Bunny and went on an easter egg hunt. We also had a little birthday celebration that afternoon (pictures coming tomorrow).

On Sunday we went to Radcliff and spent the day with Terre's family. Here is Ethan in his pin-striped overalls (made by Terre's mom).

Ethan Says Daddy

Though Ethan has been saying "Da Da" for a month or so now, we finally got it on video the other day and thought we'd share with you his growing vocabulary. He has also started saying a lot of unidentifiable words that we translate into all kinds of funny sayings. We are so proud of him and can't believe he will be turning 1 in only a few weeks!