Pinkie, Pretzel Man, and PT

It appears that even almost-sixteen-year-olds aren't beyond needing the oversight and companionship of one such as "Pinkie". 

So, it makes one wonder if "Pinkie" is the one responsible for twisting Ethan up like a pretzel each night. hmmmm....

Miss Katherine, the Mighty PT to the rescue! She pushes and pulls and stretches my "pretzel man" with energy and determination, vision and resolve.

Obviously, he doesn't mind. 

A Good Fit

A "good fit" is necessary for so many things in life...

We've been in this home with Lauren for a year now. I think we all agree that it is a "good fit" for our family, at this time in our lives. The church we attend is also a "good fit" for us... a small, quiet, transparent body of believers that often wait for everyone to get there before starting the service, and love to help each other.

Ethan has been personally blessed with several very important "good fits" in the last few months. I am so happy to report that he now receives physical therapy, speech therapy and occupational therapy, at home, from some amazing people that not only "know their stuff", but have connected well with him, love him, and have a vision for his potential. 
Psalm 118: 23 :"This is the LORD'S doing; It is marvelous in our eyes." 

Miss Katherine ~ occupational therapist

Miss Erin ~ speech therapist

Miss Catherine ~ physical therapist

The most recent "fit" was a new wheelchair!!! It did not arrive a day too soon, either. He has had such a growth spurt the last three years, that his poor legs were dangling off the seat, unsupported. His constant athetoid movements had worn out or broken several parts. His new "ride" also has the added feature of tilting!!!...that I might use it as a feeding chair! I'm still getting used to all the buckles and straps and clips that hold him secure. But, one thing is for sure: 
It is a good fit. 

First Day in new wheelchair

I DON'T EVEN KNOW WHERE TO BEGIN

Our phenomenal fellow is now fifteen!!! Tall, dark and hairy. (and, handsome)

He's been seizure-free for over 3 years!!! (with NO medication!) And, although this last Winter season was sicker than most for all of us, Ethan's health still shines. His appetite and willingness to eat has been mostly good; except for a few weeks at a time when certain molars made their appearance. I'm still working on getting used to feeding him in the "feeding chair" that Micah "built" for me. Everyone keeps reminding me that he is just too big to be sitting on my lap for meals; but, I have the best control of his head in that position. 

Last August, we moved, with our daughter, Lauren,  to a comfortable home that has central air conditioning and heat, and plenty of room for Ethan's equipment and therapy. 

He qualified for SSDI in June, and through that, qualifies for Medicaid. With that financial help in place, we have been able to begin therapy again...only, this time at HOME!!! So far, he is only receiving physical therapy twice a week. We are on several waiting lists for speech therapy and occupational therapy. His monthly "allowance" has made it possible for us to procure a few extra things, such as The Crash Pad, a large peanut ball, and an atomizer, as well as the foods and supplements that keep him healthy. His latest acquisition was orthotics. Of course, then he had to have new shoes and socks that fit the AFO's. Upon the recommendation of his PT, we procured a treadmill for his use (with help from us). We have yet to master this feat...but, we will! And, we will all become stronger in the process. Right? We've got to get this guy walking!!!

 

My biggest challenge is when Micah (the right hand man) goes to work with Howard &/or Samuel, which is (and will be) happening more and more. His absence means a LOT more lifting and carrying for me. The good news is that despite my advancing years, I have lost a good 40 pounds the last eight months, which gives me a little more "mph" when it comes to wrestling my Ethan-boy. 

Night-times are better; but, still very interrupted. I turn him over in his bed countless times, often seeing every hour on the clock, at least once. But, he doesn't resist sleep as he once did. And, seems to sleep deeper, for the most part. I know we would both have more energy if we could regularly experience a "whole" night's rest. 

Alternately, I find myself overwhelmed with guilt and gratitude. There's always so much more that I could and should do for Ethan. Hence, the guilt. And, then I realize how far we've come... how he's never been hospitalized...the victory over seizure activity... his happy heart and countenance...and, I am filled with gratitude.