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."

Redefining the "Smoothie"

Ethan considers eating a necessary evil. This is partly due to his Sensory Processing Disorder, and partly due to the cerebral palsy hampering his ability to chew properly or to swallow thin liquids. Hence, his meals must take on the consistency of a thick milk shake.

The surest way to insure that his intake of food and fluids is sufficient is to mix the components of an entire, well-balanced meal together and blend, adding enough yogurt or buttermilk and water to bring the mixture to the proper thickness. I do this in a 3-cup or a quart canning jar, using a Braun wand mixer. I put 11-yr.-old-boy-sized servings of each food group in the jar, adding the liquids last.  If, for some reason, it is too soupy, I add crackers, bread, instant potato flakes or instant baby cereal to thicken it again. The resulting mixture is usually 3 cups worth of puree, each mealtime. 


I use buttermilk or yogurt in his "smoothies" for three reasons:
1. He cannot tolerate milk (not even our fresh, raw goats' milk!); but,  fermented milk products are just fine. So, we make yogurt by the half gallons.
2. Because he isn't chewing his food, I figure that the additional enzymes in buttermilk and yogurt aid in the digestion process.
3. This is an important source of calcium.

There are advantages to having complete control over what goes into his mouth...
I don't think that it is a coincidence that he is the healthiest member of our family!  :)
Whenever possible, I use fresh, raw ingredients...our own eggs, uncooked oats, spinach...
Otherwise, with a few exceptions, he eats what we eat.  I have learned that,in addition to milk, tomatoes and pork do not "sit well" in his stomach. I also avoid sugar, excess salt and fats.

Here is a typical breakfast "smoothie": 1/2 cup raw oats (soaked in warm water), 1 egg, 1 banana, 1/2 cup of yogurt, and 1 scoop of protein powder.  I give him "dinner" at lunchtime...that's his "meat-and-potato" meal, with lots of vegetables, too. The evening meal is lighter, so as not to cause reflux at bedtime. A mixture of cottage cheese and applesauce and yogurt with some sort of grain (bread) is not uncommon. I also add supplements, as needed, such as EmergenC powder, herbs, liquid calcium/magnesium, melatonin, etc., which are barely noticeable.

He drinks his meals, on my lap, from a tiny cup, in little sips, which I deposit into his mouth. After making sour faces, perhaps even gagging down the first couple of sips, he relaxes and nearly guzzles the remainder of the meal, willingly and hungrily, after we "get his swallower working".

I am so thankful that all these years (and especially in his early years) we have been able to avoid a G-tube.  Meals that used to take an hour or more, now take about 15 minutes.  I do hope to have him  feeding himself and chewing someday; but, in the meantime, he is consuming sufficient quantities of healthy food and growing "big and strong" accordingly. At 11 1/2 years old, he now weighs 60 pounds.

For now, Ethan "eats to live", not "lives to eat".  And, that is something we would all do well to consider.

Daily Duties Are a Big Deal

I thought about entitling this entry, "When Ethan takes a bath, Mama gets wet". But when I considered the challenges involved with all of Ethan's daily hygiene, care, therapy and activities, I decided to write about Sensory Processing Disorder. It is SPD which is responsible for making these daily duties so challenging and exhausting for both Ethan and his mother.

Before I continue, here is the definition from Wikapedia:

"Sensory processing disorder or SPD is a neurological disorder causing difficulties with processing information from the five senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SPD, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SPD; the difference is that information is processed by the brain in an unusual way that may cause distress or confusion.
SPD is its own diagnosis, but it can be linked to other neurological conditions, including autism spectrum disorders, attention deficit disorder, dyslexia, Developmental Dyspraxia, Tourette syndrome, multiple sclerosis, and speech delays, among many others. There is no known cure; however, there are many treatments available."

In Ethan's case, SPD is one of many effects of his cerebral palsy.  For many years, we had  severe seizure activity that occupied our attention. Now, that his epilepsy is under control (virtually non-existent), we have turned our attention toward other issues, SPD being one of the main issues. However, something as simple as brushing his hair, can trigger a neurological response that is akin to seizure activity, as he is unable to process that sensation properly and he goes on "overload".

SPD can affect one or more or all of the senses. For Ethan, it's "all".  Here are a few examples from each of the categories:

Vision~ For him to look up and out at his surroundings takes a great deal of courage, as he perceives the world about to smack him in the face. Often, he will blink or squint, as though expecting to be struck.
Auditory~ Sudden loud noises, such as someone sneezing or coughing startle him every bit as much as the church congregation simultaneously turning the pages in their Bibles or hymnals. A little child running past, or a baby crying can really "send him for a loop".
Touch~ This is where most of our challenges reside, as everything from brushing hair and teeth, swabbing ears, washing face, getting dressed, trimming nails, etc., etc. can produce a "happy spell"...uncontrollable "laughing" which usually results in vomiting...I suspect a form of seizure activity.  Not a laughing matter.
Olfactory~ The aroma of food cooking or an air freshener, candle burning or someone's perfume or lotion can have a profoundly nauseating affect on Ethan.
Taste~This is so closely associated with smell, it's difficult to tell which it is that sets him off. Just sitting down to the table usually makes him gag. He will often lose the first swallows of food at a meal, before "getting a grip". Otherwise, I haven't noticed that any particular tastes/flavors bother him.
Vestibular/Positional~ If I allow him to lie on his back for any length of time, he will get sick to his stomach.

I'm not sure where this one fits in; but, a ride in a vehicle, particularly a bumpy ride or riding in the dark with oncoming headlights can have adverse effects, as well. I resist taking him out at night for that reason.

Now, you might assume from this, that bath-time is traumatic. Not so. He gets a little overly excited about skin exposure; but, once Ethan is in the tub, it's a party. And, Mama gets wet.

Gaining, Growing, Grin

Last June brought on the first breakthrough seizure sessions in a year, with the heat. In December, Ethan had another single episode, much milder and shorter in duration. We blamed that one on the excitement of family gatherings, the changeable weather, etc., and didn't expect to see another one for a long time. Yesterday morning began with one scary seizure in which he turned very blue. In fact, the only aspect of the seizure was his inability to breathe. I didn't see the usual jerking, staring and stiffness...just the sounds and panic of someone who can't breathe. After what seemed like a very long time, he gasped, gagged and fell limply into a restorative 3-hour nap. When he awoke, it was if nothing had ever happened. All smiles, his day began anew.

I always tend to search for reasons for his seizures, as if I could prevent them by finding the cause. Well, in this case, I think the cause may simply be a growth spurt. After all, he is eleven now. As of today, he weighs 57 pounds and is 4 feet, 2 inches tall. The space that was left from pulling that baby tooth is being nicely filled-in by the permanent tooth! It's time to find him a bigger wheelchair, too!

So, the seizures may be an indication of good things happening. We will continue to focus on the positive, thankful for his good health and sweet disposition.