The Future: What Lies Beyond?

Path, Mt. Blanc, Switzerland

Occasionally we get glimpses of what lies ahead, mostly through the CHASA family (facebook group and list-serve).  What shines through most is that kids are amazing.  They persist, they are innovative, and they overcome.

It’s that fine balance between refusing to accept conventional medicine’s “good enough” and pushing too hard… (every time we have a specialist consult where we are told E is doing “very well, considering her diagnosis”, and to “expect things to degrade over time” and “the best we can hope for is maintenance of current function”, I feel like screaming).  Finding the line between letting kids be kids, but also prioritizing alignment and function.

Breathe.  She will be okay.  She *IS* okay.  And so is your child.

Rarely do I have nights where I remember my dreams, and rarer still are they about anything that makes sense.  However, the other night I had a dream…:

E is an older teenager, sitting in a cafe.  Her hair is long and straight.  She is pretty, in a modest sort of way.  She is earnestly talking with a man who is much older than her – with facial stubble and weather-worn skin.  He looks like a man who has seen many things – haunted, rough.

He says to her, “How can you believe in a God who would do THIS to you.” (he gestures to her postured affected hand) “What good is such a God to you?”

She leans forward over her drink and I see her take his hands in hers.

She answers, slowly and confidently, “God didn’t do this to me – our world is a broken one.  Suffering, disease, and death are a part of it.  It wasn’t meant to be so, and we feel the loss of what was, what should be. All the things in this life are wrappings and bows – distractions from what really matters.  Inside lies our heart, the essence of who we truly are, our soul.  We obscess over the wrappings but neglect the gift inside.  It’s not about me.  It’s about God.  The story is about Him.  We decide what part we play in that story.  So it’s not about what good God is to me, but what good I am to God.  Do I choose to be with Him, or against Him?  There is no middle ground.  No matter my circumstance, will I trust Him?”

For we are to God the sweet aroma of Christ among those who are being saved and those who are perishing.

2 Corinthians 2:15

When I was in labor with E, my mom felt a strong urge to pray for her.  There was a battle being fought for E’s life, and for a moment she was caught between birth and death.  And here she is today, with a story to tell.  A journey of her own that continually unfolds.  Our lives do not consist in the abundance of our possessions, our accolades, our fame, our fortune, our beauty.  What counts is not the outer vessel, but the beauty that lies within.

What gives E’s life meaning is not how well she overcomes adversity.  She may very well need to adapt and find different ways of doing things.  What matters far more is her eternal significance.  Will she follow Jesus?  Will she lead others to Him?  Because everything else in this life is peripheral.

The Bridge to God

How Your Tough Times Can Help You Help Others

When It’s All Been Said and Done

Well I could talk for hours about His coming
But the louder that I speak
I’d just grow deaf against His call
And I could pray for years
I could bind my ills and my fears
And even believe I have the answer to it all.

But when it’s all been said
And when it’s all been done He’ll ask me
Did you go my way child
Did you know my Son
And when it’s all been said
And when it’s all been done He’ll ask me
Did you find your way within my Son

Well I could sing his praise
I can tithe my life away
to build a church that stands
Much taller than the rest
Or I could speak a language
That only few could understand
Or write a book that tells the world
My way’s the best

But when it’s all been said
And when it’s all been done He’ll ask me
Did you go my way child
Did you know my Son
And when it’s all been said
And when it’s all been done he’ll ask me
Did you find your way within my Son

And when the time arrives
To leave behind our earthly lives
And go before the God
That calls our souls to be
Will you answer ‘Lord I knew you well
I walked Your way
I lived a life that caused another man to see’

Now you can spend your time
Turning tricks for all mankind
And you can base your life on meaningless reward
But a wiser man is he who knows himself eternally
And sees his value not in his life but in his love

But when it’s all been said
And when it’s all been done He’ll ask me
Did you go my way child
Did you know my Son
And when it’s all been said
And when it’s all been done he’ll ask me
Did you find your way within my Son

Philip Sandifer

 

I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

download

“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)

Entering the School Years: Our Therapy and Orthoses Age 5-8

As we enter the school years, I have spent some time reflecting on our journey thus far.  Could we have done more therapy?  Absolutely.  Would it have helped E have more functionality?  Probably.  Would it have been worth it?  Maybe Yes, Maybe No.  It’s been a gradual process, like groping in the dark trying not to stub our toes.  There is little assistance (in Canada, anyways) beyond the basics.  If you want more, you have to search it out and do it (and pay for it) yourself – although usually the therapists and physicians (pediatricians, GP’s) are supportive and assist if/when possible.  We have done some series of twice a week PT and OT sessions, but don’t find many gains.  Instead, we have decided to focus on typical kid activities and regular life experiences for most of our “therapy”.

Therapies:

  • playground confidence – going to various playgrounds and gaining increased skill and confidence on the structures
  • scooters – practicing on 3-wheeled scooters
  • bicycle with training wheels – practice steering, pedaling, and balance
  • swimming – gaining water confidence – started private swimming lessons at age 7 and this has been going so very well!  (Highly Recommended)  We plan to continue these for many years!
  • Taekwon-do – E started in a kids’ class, and this has been so great for balance, proprioception, and gross motor skills (Highly Recommended).  We plan to continue this for many years!
  • gymnastics – E continued this for age 5-6 in a younger kids’ class, but discontinued after this point as it got too tricky to move on to further levels
  • obstacle courses – tunnels (crawling), balance beams, ramps, hoops, etc.

Upper Limb:

Thumb Splint – E still typically keeps her thumb postured in her palm unless consciously opening it.  Our mainstay for the thumb continues to be the McKie thumb splint.  Measuring is easy and we have had no issues ordering online – cost is around $25. (http://www.mckiesplints.com/features.htm).  The palmar surface is nice and open with this splint.

Wrist Splint – E’s wrist tends to bend downwards quite often throughout the day.  She is able to elevate it with effort since our Alabama CIMT camp.  To maintain range of motion, we find the Ottobock cock-up wrist splint very effective.  It also doesn’t cover the whole palm and is less bulky than a Benik.  There is an adjustable metal stay in the wrist area.  We layer the Ottobock over the McKie.

Elbow Brace – We continue to like the Bamboo Brace for elbow posturing.  It comes with 5 or 6 different strengths of stays that you can use interchangeably.  The bamboo has been helpful for keeping the elbow straight when learning to hold handlebars (scooter, bicycle).  We also use it when E is eating as that is another time her elbow postures.  It is also a pretty cheap investment at around $50 online. (http://www.amazon.com/The-Bamboo-Brace-Infant-Toddler/dp/B0051747D8)

CIMT Constraint – We just purchased an economic wrist splint from her orthotist for the left hand, and put a sock overtop of the fingers.  E is able to control herself and not remove the sock now that she is older.  We haven’t done much CIMT, but she actually asks to sometimes.  We haven’t done much not because she isn’t willing, but because it takes such an overwhelming amount of time for me 😦

Lower Limb:

AFO/UCBL –  E underwent serial casting of both ankles when she was 6 to increase her dorsiflexion range of motion in her right ankle.  Following this, she moved right into a new AFO.  We continue using an off-the-shelf Cascade Chipmunk UCBL for her left foot.  I should mention, we also found a new orthotist, who is also AMAZING.  He was able to analyze Dr. Jordan’s AFO and understand the intent of it, and make some suggestions as well.  Basically, a fixed AFO is great for running and fast movement.  It’s very stable.  However, it does not allow a lot of joint movement.  Since we were using it all the time, it contributed to her DECREASED range of motion. A hinged AFO is great for standing, walking, going around the house.  It’s not as stable, but it allows for a lot of joint movement.  Since E’s ankle is pretty stable right now and doesn’t collapse over on her very often at all anymore, she does not need the AFO to be as rigid in the ankle area.

We purchased two AFO’s, a fixed and a hinged one, with the plan to use the fixed one for running, parks, out and about, and the hinged one for at home, indoor (more sedentary) activities.  However, after trying both out, we use the hinged one consistently.  It has these built in “tendons” on the sides that force the foot into dorsiflexion at rest.  (When it’s off her foot it sits at about a 30 degree dorsiflexion) It can even be used overnight for stretch.  It seems to stabilize her ankle very well (which is not overly weak at this point), and after 6 months of use her foot is almost straight again.  She still tends to walk on the outside (lateral) edge of her foot when not in her AFO, and her foot is slightly curled (c shape) inwards.

img_20170103_114540 img_20170103_114547

Inverse Wedge Shoes – We are also using stretch wedge shoes again, about 30 minutes a day while standing still (playing iPad or computer games).  I also highly recommend these for increasing/maintaining range of motion.  Just a wedge (about 10 degrees maybe?) added onto a sneaker by the orthotist.  We measured what angle she could comfortably passively reach and aimed for a similar wedge angle.

img_20170103_114013

E is being monitored every 6 months by the orthotist and it is planned to make a new AFO yearly for her now.  We will continue with the hinged/”tendon” one for awhile now, as well as the stretching wedge shoes.

Trunk Support:

SPIO – We continued to use the SPIO TLSO vest for age 5-7.  The vest does improve E’s seated posture. It is a cheaper alternative than the DMO and it is easier to apply than Theratogs.  It is hot in summer, though, so we mostly just wear it in the fall, winter, and spring.  Each of these fit about a year or so before we have to size up.  The TLSO is quite adjustable and forgiving if you get it a bit on the larger side.  We also order these directly online. (http://www.spioworks.com/product/26/classic-tlso).  E really dislikes wearing the vest now that she is older – she dislikes the tight sensation, the warmth, and is embarrassed about the bit that peeks out her shirt.  I had to bribe, threaten, and cajole.  We have come to a point where I allowed her to choose between the SPIO vest or regular chiropractic adjustments, and she has chosen chiropractic instead.

School:

We had been advised to hold E back for a year before starting Kindergarten as she also has constitutional growth delay in addition to her gross motor delays (balance, coordination, physical skills).  She didn’t qualify for an aide (being “too functional” to qualify for access to the limited pot of funding), but was unable to independently potty or dress and has difficulty navigating in crowded situations.  So instead, I homeschooled her so that she wouldn’t fall behind.  It went so well, and we were able to cover the standard information so quickly, that we have decided to continue the homeschooling route!

Summary

So, that’s where we are at!  As to where we are headed, in the future I hope to pursue:

  • CIMT – as E is able to consciously choose to engage in it
  • TMS – transcranial magnetic stimulation – offers benefits similar to CIMT but with less effort; I hope to combine this with CIMT in the future
  • Robotic gait training, Robotic arm training – these require a minimum leg/arm length which E does not yet meet
  • Swimming – particularly water walking and deep water walking for gait training, but swimming is the perfect rehab sport for stroke!

I am happy with where we are, and yet there are always bittersweet twinges of where we could be.  I am sure these feelings probably always remain.  Being a part of a pediatric stroke community there are stories of both challenges and successes that we share, and those that we do not.  Some face intense issues – seizures being one – that we have not encountered.  Others seem to recover almost completely (Mia’s Pediatric Stroke Blog).

I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

download

“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)

Pediatric Hemiplegia: Affected Side Activity and Therapy Ideas

When starting out on this journey it is difficult sometimes to know what to DO. Taking action helps us to process our emotions, so we don’t feel so helpless.  We want our child to have the best care, the best recovery, the best resources.  To be honest, YOU are your child’s best therapist.  To have a therapist come in a few times a week (or less!) just doesn’t make much of a difference if there is no carry-over with caregiver/child…  YOU will make more of a difference in your child’s life and recovery than anyone else will.  This is not to say that consultation with therapists isn’t necessary or recommended, but implementing a home plan and minimizing therapist visits is a definite viable option.

The good part is you don’t have to feel guilty spending minimal $ on therapists when you can get similar or better results at home (especially if your child is like mine and gives you the “help!” look as soon as you arrive at the therapy building).  The cost is equal to your time and many things you already have around the house.

The bad part is that it puts pressure on you, the caregiver, to put in the time and effort for daily therapy; and guilt if you do not.  However, for your child to experience the best recovery possible, the onus is on you already unless you can afford daily therapy…

Recommendations I have read suggest 2 hours/day of therapy-type activities, 6 days a week.  This is great to shoot for…but life happens.  Therapy burnout happens.  The good thing is that not all of it has to be active on your part – i.e. iPad is a great activity for the affected hand where you don’t have to be hands-on.  Another way to get that therapy edge with minimal effort is to make use of braces, splints, and other alignment orthoses – see post HERE.  Dr. Karen Pape describes these devices as having a therapist’s hands following your child around all day long!

I have compiled some suggestions of possible activities to do around the house.  It’s a great idea to ask for a home plan as well from your child’s therapists.

Affected Hand Activities:

  • Playdough – squishing, rolling, stamping with handled stamps or palm stamps as your child’s affected hand is able – a good two handed activity is rolling it out with a rolling pin
  • Finger paint – or pudding – smearing on the bathtub, licking fingers if pudding, smearing on a mirror (great wrist exercise)
  • Transferring tasks – balls, rocks (whole hand), or beans, dried pasta (pinchers)
  • Throwing balls, or beanies into a bucket or through a hoop
  • Blowing bubbles with a wand – can make the wand handle thicker for easier grip using duct tape, foam tubing, etc.
  • Popping bubbles with affected hand – great for reaching and shoulder motions
  • Pull toys – like the classic puppy on a leash, or a real leash around a stuffed animal
  • LeapFrog Alphabet magnets, or other magnets to spread on the floor, pick up, and put on the fridge or in their holder
  • Puzzles with big pegs, can wrap coban (self-sticking stretchy material – can be purchased cheapest at farm supply stores as “vet wrap” for horses’ legs) around them to make them easier to grip – flip each piece over before placing (I put stickers on the bottoms – and need to assist with the supination)
  • Writing on mirrors or windows with Crayola Window markers or dry-erase crayons or markers – great wrist activity
  • Washing walls, mirrors, windows, tables with the affected hand – we used a wet sock over her hand that she could wipe with
  • Weight bearing – place your child in side-sitting, with their trunk weight supported by the affected arm.  Read to them, let them watch TV, etc, but only as long as they are weight bearing on the affected arm (you will have to watch!).  Start at around 1-2 min and work up to 10 minutes at a time.
  • 5 in a row type game where you pick up checker-type discs and drop down slots.  Thrift stores are a great place to pick up cheap games.
  • Trouble game where you have to push down the popper with the affected hand
  • iPad / tablet – place a sock or splint on the unaffected hand to restrain its’ use – have this be an affected hand ONLY task as it is HIGHLY motivating!
  • Eating popsicle with affected hand – use a tensor bandage to help wrap hand to the stick
  • Wash toys in a bubble-water bin with affected hand; can add little toys frozen in ice cubes for interest; can add food coloring for interest as well
  • Flip-sticks (where you flip them to get the sprinkles to fall from one side to the other) – goo tubes, etc, anything that needs to be flipped to watch the material flow down
  • Musical instruments – again, may need to use coban (vet) wrap or a tensor bandage to help strap wrist to the instrument
  • Memory game where the cards need to be flipped
  • Bean, Lentil, Dried Pasta etc. bins filled with hidden small toys to rifle through and discover
  • Many early childhood games can be adapted to be therapy for affected hands/arms, browse your local thrift shop or craigslist/kijiji 🙂

OT-fun-watson-world-470x352

Hint:  If your child is having difficulty with finger isolation, try wrapping the other fingers out of the way using vetwrap (try a livestock supply place) or a tensor bandage, being careful not to cut off circulation.

Bimanual Activities:

  • Plastic Eggs / Egg Hunts – hide treats, stickers, etc inside
  • Pop beads – get super easy ones at first
  • Catching balls
  • Coloring/writing – have your child lay down on their stomach, this will force your child to use the affected hand to hold themselves up & the other hand to color/write; aqua doodle mats (paint with water) are good for the younger pre-writers
  • Silly (Therapy) Putty – have a large enough chunk that both hands can grip it with assistance, then PULL-PULL-PULL it apart!  (Can be purchased as therapy putty with 5 different resistances – note that regular silly putty is close to the easiest resistance).

Balance and Gross Motor Activities:

  • Crawling – so excellent for hand/arm weight bearing as well as crossover between the 2 brain hemispheres!  Continue in older children, even if you have to bribe! – to help teach crawling, use a rolled towel like a sling around their belly to take the weight pressure off; discourage butt scooting as it is highly asymmetric
  • Crawl tunnels – even for bigger kids
  • Balance bridge made of 3-4 foam pool noodles duct-taped together
  • Balance transfer – climbing over and walking on couch cushions, dog beds, mattresses, air mattresses, pillows, piles of blankets – spread these all around a play room regularly
  • Standing Balance – have your child stand on a foam piece (dog beds work great) while standing to play at a coffee table or end table; even if it is iPad or while watching movies
  • Obstacle courses – climb over ottomans, climb on and jump off couch cushion, crawl through chair legs, jump from one hula hoop circle to another
  • Ball or foam pits, buy a cheap second hand toddler pool and load it up – you can get old foam cheap on used sites and cut it up into chunks
  • Walking on uneven surfaces – sand, gravel, dirt, mud
  • Walking up and down ramps and hills
  • Visit different playgrounds and utilize to your child’s ability
  • Standing on one foot, putting the other foot on their knee; switch legs (assist with balance as required)
  • Walking up and down steps
  • Treadmill, slow and steady, assisted in a harness or held (both sides) until gait is established
  • Gently massaging spastic and weak muscle groups with some massage oil, this encourages circulation and sensory awareness (my daughter hated massage from an infant up so we haven’t done much of it – maybe too much sensory overload)
  • Gymnastics – with one on one support
  • Exercise balls – balance sitting, on tummy, on back, etc.  These are great from baby + with assistance
  • Toys stationed at all different heights around the room to encourage up/down and side to side movements
  • Swimming
  • Water walking is GREAT for gait training; deep water even more so (with floatation device)
  • Balance / strider bike
  • Scooters (3-wheeeled, hint: Daisy Powerwing scooter has brake on Lt)
  • Tricycle
  • PlasmaCar

Therapy:

I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

download

“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)