Slow and Steady Wins the Race

When Gwen was a baby,  it was easy to shrug off people's comments.   To the outside world it appeared as though her limp noodle of a body, draped over her daddy's shoulder seemed burned out from an eventful day.  However, it was quite the opposite.  More than likely Gwen just had 12 hours of sleep and was ready to go!  When people said, "oh she's so sleepy", Jesse and I usually nodded with a "yes"....it was just easier than explaining what was really going on.                                                                                          

As Gwen's grown older, bigger, and more difficult to handle, so have the questions.  Gwen's two (almost 3) and people just assume she's talking and running all over the place like any toddler would be.  How easily people's cute anticipation turns to utter confusion when I tell them she doesn't crawl, she doesn't sit, she doesn't walk, she doesn't talk.  I can't fault people for asking stupid questions.  In fact, I welcome the stupid questions versus having people stare at Gwen like she's some kind of sideshow (really, it's true)!

Cerebral Palsy (CP) is a hard diagnosis to understand. Someone with a a brain injury can be high functioning, low functioning, or can be middle of the road.  Gwen would be categorized as low functioning and completely dependent upon others to do things for her survival. What's most frustrating as parents is that Gwen's body wants to go places, but her brain has a difficult time connecting all of those switches  to turn those movements/actions/reactions "on" and "off".

Thanks to the multiple therapies Gwen receives weekly, we're learning more and more ways to help her learn to use her arms, legs, hands, mouth, vision, etc.  

We started working with Gwen in oil and blue light.  We work in a dark (sometimes in natural light), silent room with only a blue light.  We lye Gwen on her tummy on a piece of plastic and place oil on her arms, legs, and belly.  There are no distractions, no white noise, nothing for Gwen to concentrate on other than her body's movements.  Gwen's legs are amazing!  She moves her legs in a crawling motion and scoots, but she hasn't quite grasped the same motion for her arms and hands.....but we're working on it!

After oil, we transfer Gwen into a tire inner tube that hangs about 6 inches off the ground and we turn on a heartbeat sound.  The shape of the tire puts her body into flexion simulating being back in the womb.  Since we can't always go to the school for therapy, our therapist gave us instructions on how to make an in home "tire swing".  For never building one of these before (or anything for that matter), I give myself an "A"!
Since Gwen spends a majority of her time laid out either on her back or her tummy, our therapists have taught us the importance of Gwen being in flexion to familiarize herself with her arms and legs and to help calm her nervous system.


Our physical therapist found a perfect solution for Gwen to be independent in flexion.  A European bath tub.  I squirmed at the sight of Gwen in what appeared to be a "trash can", but Gwen loved every second of it!  Even more so when her BFF Bella would help during bath time!  It was at this moment we learned Gwen's love of water.  She'd spend hours in her "trash can" if we'd let her.

I started scouring the Internet looking for other "water therapy" ideas.  Sure enough, I came across a neck float and an upright pool.  To some it may look like a choking hazard, but it's been a life saver for us!  It enables Gwen to have a sense of independence and free reign to move all of her limbs.  During the cooler months we set up shop in our guest bathroom.  Once summer comes, Gwen turns into a little fish spending at least 4 days a week in the pool.


When it comes to play time, most of Gwen's toys light up and make music.  Most everything is done against a black background or in her vision box to help cut out any outside stimuli. She does not reach or grab at things, but she does swap at them.  What's exciting for us is that she's slowly starting to relax her clenched fists to grasp things...it's those little things!


Fortunately we have access to try different positioning options for Gwen.  Since she can't sit or stand on her own, we use a high density foam chair (Tumbleform) and a stander.

           

The greatest challenge for us continues to be feeding.  We'd hoped for a miracle by now that Gwen would be able to eat a cheeseburger or french fry, but that's just not the case.


Gwen will eat very small volumes by mouth (ice cube size) before she becomes too fatigued,  gags, or puckers her lips so tight you can't get anything in there!  What she can eat needs to have some consistency: baby food, purees, oatmeal.  If we just put water in her mouth, she'd aspirate and gag instantly.  Until she's able to get more caloric intake orally, we'll have to keep the G-tube.

We started taking Gwen to the dentist around 18 months because she didn't have any teeth yet!  I was mildly panicking because she wasn't chewing on anything to help those suckers break through so I thought for sure they would have to slice her gums.  Sure enough they starting sprouting shortly after that visit and now that she has all of her teeth we're opening her up to foods with texture: baby Cheetos, biter biscuits, puffs, yogurt melts, spaghetti-o's.


We have come a long way, but the journey continues.......