Change, Changes and More Changing

 Some things never change...

like Ethan's love of being in the water,

on top of "Liberty",

or at the piano.

But, if I had to sum up the last 8 months, the title to this blog post would do it: change.

First of all, Ethan is turning into a young man right before my eyes! And, he is on a growth spurt, for sure! I just took his measurements: 76 pounds, and 5 feet tall!  It's about time for our annual visit to Dr.Kelfer, the neurologist. In spite of the Summer heat making its way into our home, he has been seizure-free!
(not including the frequent "happy spells", which are mostly brought on by sensory issues)

  

Then, we acquired the long-awaited TAOS walker (see previous post).

                                                         

Unfortunately, due to my own weakness and chronic pain, the weather, the lack of space in our home, and the arrival of Antoine, we haven't made much use of it yet. I am determined that that will change!
 

Yes, our biggest change has been the addition of our grandson, Antoine, to our household. I was concerned that this would have a negative, disruptive impact on Ethan; but, his tolerance of Antoine's 2-year-old antics and noise-making is nothing less than a miracle! In fact, they seem to have a very special relationship that I feel has already benefited both of them, equally.  Antoine is unusually gentle and considerate of Ethan's needs, trying to lift him up when he falls over, bringing him toys, visiting him in his bed, or on his tall chair. It is nothing less than precious.

After a year of making two, 2-hour round trips per week to Hope Therapy in Waco, for speech, occupational therapy and physical therapy, we are once again stuck at home. We have begun the process of re-applying for Medicaid (much as we would rather not!); and, at the same time, looking into bringing therapists into our home. So, there's the possibility of more changes. :-)

Now, just for fun, I must tell you a little story, which reflects Ethan's intellect, as well as his sense of humor...

 

We have been using "YES" and "NO" cards to aid Ethan in making choices and answering questions. Just as I finished feeding him, and before Micah took him from me to stretch him and place him in his chair, Micah held up the "yes/no" cards for Ethan to see. He then asked him, "Do you love me?"  The immediate response was a hearty chuckle, followed by a deliberate swipe at the "NO" card...  
Of course, we all know that Ethan loves Micah, and Micah loves Ethan...after all, he's the one who generally takes him to the bathroom, and carries him from bed to chair, etc.  That's why it gave us all a good laugh...to see him obviously make a joke at his brother's expense, just as any 13 year old boy would do.

This & That & Thirteen

Besides the much-needed therapy, Ethan has been receiving much-needed therapeutic equipment...not the least of which is a walker that fits him (and will for a long time!).  Along with the walker, he has been fitted with orthotics which should give his feet proper positioning and support.

Winter came along, and so did illness, for all of us. And, it lingered. So, we lost a bit of strength and momentum during that time. During one bout of sore throat and glands, Ethan decided it best not to eat or drink. For a little over a week, all my efforts were spent at simply keeping him hydrated and warm.

Here he is, grinning at me, after our first successful meal in too-long-a-time. Today, after five days of eating regularly, we had a "workout" in his therapy room, here at home.
He didn't seem to mind the 30 minutes in his stander, as long as he had his hula hoop. Maybe there's enough Texan in him that he was pretending that it was his lasso. 

 



Because, he "rode" the peanut ball, bouncing and exchanging the hoop from one hand to the other. Then, I placed him tummy-over the ball, on hands and knees, with the mirror in front, so that he could see what he was doing. Next, was the ball pool...first sitting, then side-sitting, propping on one elbow, then the other. We ended by walking through the house with and without the walker. 


I'm not sure which one of us got the better workout; but, I am looking forward to establishing a daily routine of activities, as time and strength permit. 


I recently purchased two special swings for him: a platform and a hammock style. I hope to order the chosen swing frame next week. We are also waiting to receive another specialized walking system, called TAOS. 
(Therapeutic Ambulatory Orthotic System is designed to function as an essential aid for children with neuromotor impairments including CP.) Perhaps, that will be the topic of Ethan's next blog. :-)


Oh, and did I mention that he turned THIRTEEN?!?!