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?!?!

The Begining of a New Era

On the wall, just before the waiting room, at Hope Therapy

After a 2-year "sabbatical", Ethan is back to a therapy regimen that will surely test our determination and fortitude, especially during these long, hot, Summer months.

We just finished our first week at Hope Therapy in Waco, where he will be receiving treatment from a physical therapist twice a week, and speech and occupational therapists, each, once a week. Two appointments, twice a week requiring a two-hour round trip. See what I mean?

This is work!

Getting acquainted with his new PT

Then, there's "homework". I'm sure that if I could convince Ethan to sleep at night, I would have the stamina to see our goals to fruition. Sometimes, "maintenance" is all I can muster after a mere 2-hour rest. But...and it's a big "but"...if we can get him more self-sufficient (standing, walking, eating, talking), maybe my load won't be quite so heavy in my old age. He's tolerating his stander well, here at home; and, I'm hopeful that will help him in the Lite Gait (treadmill) at Hope Therapy. He "walked" for 6 minutes yesterday on this special machine!

You can believe that I'm clinging to that verse on their wall these coming days, weeks, months and years....

Prayers are always appreciated.

Look, Mama! NO cavities!!

This was Ethan's first, official dental evaluation at which he received x-rays and cleaning and examination for cavities.


At his best, happiest and sleepiest moments, Ethan may pause in his constant movements; but, generally his athetosis (a condition in which abnormal muscle contractions cause involuntary writhing movements) makes delicate care of his nails, ears and teeth, a challenge. Add to that the panic that grips him when restrained and confined, and we have a boy who becomes an hysterical moving target. 

In spite of all this, the caring and competent dental professionals were able to do their job. The hygienist was only bit once. His teeth - mostly new or loose - are clean and cavity-free. It was quite the ordeal for him; but, as you can see from the photographs, he was soon showing off those pretty teeth and had forgiven us for the intrusion into his mouth. He even ate a large lunch and supper later, without balking. I guess he had worked up an appetite.

My Brother's Keeper

"He ain't heavy, he's my brother"

Before Joshua was born, I had a vision, of sorts. My mental picture was of Micah and Joshua carrying Ethan between them, him sitting on their arms, which were locked together. What that vision spoke to my heart was that his brothers would be there for him, in ways that I couldn't be, to carry him through his life... one on each side, each filling a different need.

I am seeing this vision unfolding.  Micah is now 14, Ethan is nearly 12, and Joshua is 9 1/2.
I have called Micah "my right hand man". He is that and more. He is my second pair of arms, my second pair of eyes. More and more I depend on him to lift Ethan out of his bed, or into his wheelchair, or stand with him in the bathroom. After long, sleepless nights, adjusting Ethan in his bed, I am often weak and weary during the day. Allowing Micah to do more, reserves my energy and strength for dressing, feeding and general hygiene care and therapy. When there is a urgent situation which requires a quick response, I can count on Micah to be there, reacting appropriately.  He knows how to protect Ethan from aspirating vomit. He is a calm, strong attendant in times of seizure activity. He can bring Ethan to his senses when he's being extra "neurological".  


Joshua astounds me with his maturity. In a way, he did not have the pleasure of being the baby of the family. He forfeited some of his babyhood, since those early years had me incredibly preoccupied with a toddler that required constant attention. In those days, it took me over an hour to feed Ethan. His seizures came in sessions which lasted 2-3 hours, and sometimes this would occur more than once a day. Much of my parenting  was done from Ethan's bedside, and through the older siblings.  And, yet, with all of this, I have never detected even a hint of bitterness on Joshua's part. No "acting out", as some might expect. He is compassionate, sympathetic, capable. And, he loves and cares for Ethan.


I cannot see what the future holds. Except for this...Ethan has brothers who are not afraid to be his "keepers".
 

The Latest Acquisition

Tilting Positional Chair

God never ceases to amaze me with the ways He has blessed and provided for Ethan's needs. Each piece of Ethan's therapy equipment has a remarkable story behind it...and I mean remarkable.


Yesterday, we added a positional chair to his collection, which, if it had been purchased new, may have cost upwards of $3000 with all the attachments. But, God said, "Here, Ethan, I want you to have this. It is a gift."  God uses a variety of people to bless us. This week I received an email from Ethan's occupational therapist ,whom he has not seen for nearly 2 years.  She thought of us, when she learned of a surplus of special needs equipment from a local school district. These positional chairs and standers had been procured and were being offered, free, to anyone who could use them, through the caring and generosity of an Arlington businessman.

I hope that Ethan and I can learn to use this chair for many purposes, not the least of which as a feeding chair. It is versatile and fully adjustable and should last him through several growth spurts. Giving ample support where it is needed, this chair should encourage better posture and be a welcome alternative to his wheelchair. He seemed comfortable during the trial "sit" this morning. 

All tuckered out

I thank God and ask that He would bless all those human hands and hearts that listened to His promptings. 

 

Sewing For Special Needs

You may wonder with all there is to do in a household with four boys, (not the least of which is  a handicapped child), why in the world I would bother sewing.  I've wondered this myself, from time to time. So, after some consideration, this is my conclusion on the matter.

Sewing gives me something viable to do, when there's nothing more that I can do. And, it is something necessary  that I can provide that costs little in time, money or energy.

Going shopping for clothing is a rare and courageous act for this Mama.  I feel much more comfortable at my desk, stitching up a pair of britches, than searching for the right thing at the right price away from home. To do that, I either have to leave Ethan with someone, and wonder how he is doing; or I haul him with me, and wonder if this stress will produce seizure activity by the end of the day.

That said, it isn't as though sewing is all fun and games for me. Sometimes, it is downright frustrating. I've never considered myself a "seamstress", it isn't "second nature" for me, as it is for some. I really have to work at it, and my "creations" are pretty basic.  But, when all is said and done, I feel a sense of satisfaction that makes it all worthwhile.

I've made pull-over bibs for Ethan since the very beginning. My favorite pattern uses small hand- towels to which a neck opening has been cut and stretch ribbing added. I have carried this one step further, and made it even easier with unwanted sweatshirts. I simply cut around the neck opening and perhaps add one layer of fabric to the front. No need to hem, since knits don't fray. It couldn't get any easier or more absorbent or more comfortable for him.

With Ethan's growth spurt came the definite need for new pants. The last batch I sewed for him were at least 4" too short, and a bit snug around the bottom.  I'm using a pattern that I have revised so that we don't worry about a "fly"...they just pull up (and down), with an elasticized waist. I have to admit, they are a tad big on him; but, better that than too small. He's growing, afterall!

The most challenging of my recent projects has been homemade "Pull-Ups".  First of all, let me say, that Ethan is virtually potty-trained - has been since he was a year old. But, apparently I'm getting more fluids into him these days, so...well, we protect ourselves.  After a trial run, using fabrics that I had on hand that turned out  NOT to be waterproof, I found some appropriate fabrics, through a dear friend. Not only have these fabrics worked wonderfully, the friend of the friend decided to make them her gift to us. Doesn't that just melt your heart?  I've finished the first test batch of 5 pairs, saving the best fabrics for last, after I've made any necessary adjustments. They work, though; and Ethan seems to like them. So, let the sewing begin!

Are you beginning to see a common thread in this thread? Pull-over bibs, Pull-up pants, Pull-Ups...

You should be aware that boys with athetoid/spastic cerebral palsy have 4 arms and 4 legs that are continually trying to knock over the aloe vera plant, the hamper, the drying rack, etc., etc. And, I only have two hands, one of which is trying to hold him up, while the other pulls at his clothing. That leaves me at a distinct disadvantage, don't you agree?  The easier the clothing goes up and down and on and off, the better. The best way to provide that is to sew it myself.

It is one more way that I tell Ethan "I love you."