What Just Happened?

The air was thick with anticipation and excitement. 

This is something we had talked about amongst us, prayed over, wondered about. 
We'd been prepared by some excellent preaching on the subject by our dear Pastor Troy...he had opened up new areas of understanding for us. 
But, today was the day. It contained heat and noise and crowds, three ingredients that push Ethan "over the edge". I wanted to pack up, run away to the safety, quietness and predictability of HOME. 
But, at the urging of my husband and sons, I instead moved away from Ethan's thrashing body, and made my way down towards the water. 
When I came up out of the water, Pastor Troy came up to me and said these words, 

"They just pulled your boy from the water!" 

Micah helped baptize his brother

At those words, my grateful tears turned to joyful sobs. 
You see, Ethan's brothers, who love him very much, seized their opportunity to carry Ethan down all those steps to the "river", lift him over the wall, and get him baptized! 
(Kinda reminds me of the Bible story of the men lifting their friend down through the roof to Jesus for healing.)


All of this took place at an event in Glen Rose, Texas called "The Promise",  in a huge outdoor amphitheater where hundreds of actors, singers (and animals) tell the Greatest Story Ever Told. 

The Promise

Samuel, Ethan, Micah & Joshua

Ethan was one of 181 believers baptized that night of August 25th, 2018. 

"Standard Procedure"

I am not a medical professional; although my mother was an LVN, and my daughter is an RN. 

However, I am the "professional mother of Ethan". I say, without shame, that I know Ethan better than anyone. I put a lot of confidence in motherly intuition. Unfortunately, I'm also prone to second-guessing myself. 

When it comes to healthcare, seeking the most natural and least intrusive solution has always been our goal...a solution which allows, supports and aids the body to heal itself. This is usually not the fastest or most convenient method; but, is usually the safest, most peaceful and least expensive. 

For example, when it became evident that Ethan's oral motor function was not strong or coordinated enough to sustain him through breast feeding, I immediately found a lactation consultant. The result was a regimen of nursing, pumping and syringe feeding my baby boy around the clock. As needed, some of those syringe feedings (a tiny tube at the end of my finger, from which he sucked) were supplemented with fresh, raw goat's milk. He gained. And, gained. I charted every ounce. I charted input and output. And, Ethan gained and grew in strength until he was a self-sufficient nurser. I nursed him for over two years, until his baby brother was born. 
"Standard Procedure" would have been to put him on a bottle. That's what the first doctor I saw said to do. 

This isn't the end of his feeding history. As we introduced other foods,  the challenges increased, partly due to his sensory processing disorder, and partly due to the cerebral palsy. For many years, it was not uncommon for each meal to take an hour and a half. I used an eyedropper to get liquids down him, because he would choke and sputter, otherwise. Even the smell of food would send him reeling with nausea, gagging, vomiting.  I fed him on my lap until after he turned 16 years old, because I had better head control, and could adjust to his other athetoid movements, while dispensing little dollops of pureed food into his mouth.  As of January of this year, (thankfully), he willingly (eagerly) sips his "smoothies" from a special, flexible straw, from the security of his wheelchair which tilts! Meals still take time and care and patience; but, for the most part, eating is no longer "a necessary evil" in his mind.
"Standard Procedure" would have been to put in a G-tube. 

Just before his first birthday, Ethan began to shows signs of seizure activity, which rapidly became quite severe. By the time he was 5 years old, he was having 2 to 3-hour-long  "sessions" of back-to-back grand mals, sometimes 2 to 3 times a day! Our neurologist worked hard those first five years, trying one medication, then another, some in combination. But, he respectfully chose medications that would not be so toxic, requiring constant blood work. Nothing helped. His seizure activity just got worse, until we wondered if Ethan might expire from exhaustion. In the meantime, I was studying, and praying, and trusting that there HAD TO BE  an answer. The kind doctor had mentioned the Ketogenic Diet (for seizure control) several times during those early years, but always with a comment such as, "But, you probably wouldn't want to do that." I had read about the diet, and was interested. So, on a day of particularly scary seizures, I called him, and asked, "WHY WOULDN'T I WANT TO DO THAT?!?!" Really, the only hindrance, is that it requires quite the commitment. After many calculations have been made, food is measured to the tenth of a gram. Variations can cause breakthrough seizures. Long story short, it worked. We kept him on it for two years, weaning him off of it to a normal diet, as one would a medication. Ethan has been virtually seizure-free since then, with no medication. And, he hasn't had even one, little seizure for over 4 years, although puberty should have lowered his threshold. 
"Standard Procedure" would have been to put him on the strongest of epileptic drugs.
(Special note: "Standard Procedure" for initiating this medical diet is admission to the hospital. We were not willing to do that. The good doctor backed us up. God bless him for that!)

By now, you may well be wondering what the point is for this post. What prompted me to say all of this? Am I boasting? NO! Am I judging others for their choices in healthcare that have differed from mine? NO! Not at all!!! In fact, I am so very humbled; and, full of gratitude for God's protection, provision, and grace. My insufficiency has never been so evident as it is right now.

We are facing a dilemma...
My fellow has an accumulation of hardened plaque on some of his teeth. So far, I've been told by three medical professionals that "Standard Procedure" (apparently) is to hospitalize him, put him completely "under", and intubate him. This seems to me to be an extreme, dangerous and possibly unnecessary method for a dental cleaning. As far as we know, he doesn't even have cavities! He's never been hospitalized for ANYthing. He only sees his doctors for WELL visits. He is just THAT HEALTHY! He went to a dentist for a thorough cleaning 5 years ago. It took a little more effort, a little more time...and, he did bite the hygienist just once, but, it was an accident. ;-)  

So, here I am again, saying to myself and praying to God, "THERE JUST MUST BE ANOTHER WAY!"
I will continue to prayerfully explore options. And, it may be that this time we must succumb to "Standard Procedure". But, my motherly intuition is telling me otherwise. 

If you're reading this, will you whisper a little prayer for wisdom? Thank you.

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.

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?!?!