On the inside

Waking up, eyes open but the shades are still down, on the inside a picture, but it can’t be seen.

Crying, Jennifer’s strongest form of communication.

Footsteps down the stairs, she turns her head towards the door, eyes unfocused yet anticipating she “looks” at the ceiling.

The look may be blank, but it's what's happening behind it!
The look may be blank, but it’s what’s happening behind it!

“Good morning sweety”, she breathes out finally, dad’s here!

“Wanna go to kindy garden?”

Her ear turns towards me, she ponders that question for a few seconds then smiles and breathes out excitedly, kicks her legs and laughs just a little. A moment of excitement, of expectation in a somewhat dull world.

The kettle boils, finally some food, she sits patiently and waits.

” 1,2,3″ everything needs a countdown, so it doesn’t come as a shock.

She drinks, but she never holds the bottle…….

She struggles to burp, it’s painful at least, finally a release and we can have some more.

Her reflux is back, stronger than ever! She sometimes chokes on a unseemingly innocent spoon full of food, we have no idea what’s happening on the inside…..

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Throwing her clothes on cause everything takes so much time, mum and dad are late for work and we rush out the door.

There’s a cluster of noises just outside the front door, a car drives past, a bird tweets, the door closes and the key locks the door.

The cold wind blows in her face, it’s uncomfortable to say the least!

Is it snowing or raining, you can hear the rain, you can’t hear the snow…..

Is the sun shining or is it cloudy?

How do you understand all of that if you can’t see?

Interpreting every sound, but not having a clear picture…..

I wonder what we look like to Jennifer, what her mental image of us is?

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We rush into kindy, we touch the same wall everyday, familiarization by textures, she knows where she is.

Different voices every morning, and she needs some time to settle down.

“Good morning Jennifer” a familiar voice….

She turns her head, stops still for a second, a smile and a laugh, let the fun begin!

Lots of small kids, and a hell of a lot of noises….

I wonder how she deals with that, how she tries to comprehend the  noises.

I’m sure it’s too much for her sometimes, she needs time to herself too.

When I pick her up, generally she’s drained, but when we come home, she’s got so much to say….she babbles endlessly almost, she laughs and smiles, she’s such a social person.

I’m sure she tries so hard to understand whatever we’re talking about or trying to teach her, I just hope we’re teaching her the right way.

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Brain damage is just so debilitating, her legs cramp numerous times daily, they shake uncontrollably….

It’s easy to see what’s happening on the outside, it’s impossible to understand what’s happening on the inside!

Cramping comes from increased spasticity in her legs, here her groin and calves, they are not growing straight.

Spastic diplegia’s particular type of brain damage inhibits the proper development of upper motor neuron function, impacting the motor cortex, the basal ganglia and the corticospinal tract. Nerve receptors in the spine leading to affected muscles become unable to properly absorb gamma amino butyric acid (GABA), the amino acid that regulates muscle tone in humans. Without GABA absorption to those particular nerve rootlets, affected nerves (here, the ones controlling the legs) perpetually fire the message for their corresponding muscles to permanently, rigidly contract, and the muscles become permanently hypertonic (spastic).

She needs splints and special shoes, to help her legs grow straight.

Cerebral palsy isn’t progressive,  spastic diplegia does not clinically “get worse” given the nerves (brain) damaged permanently at birth, neither recover nor degrade. Unlike multiple sclerosis, her body will not be degraded by the condition.

But spastic diplegia is a chronic condition; the symptoms themselves cause compounded effects on the body that are typically just as stressful on the human body as a progressive condition is.

We’ll try the splints and shoes while she’s in the stander first, and continue to monitor her flexibility and range of movements to see how it’s helping.

One of her toes is spastic, see the picture below. The one pointing down, this is how spasticity starts. It will never be normal again, we will just try to prevent it getting worse. This happened more or less overnight, and I’m surprised that it’s her left foot, as her right foot is much less active suggesting to me the nerves in the brain that control the right leg are far more damaged.

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This is just the start, if splints don’t work there’s Botox, serial casting, and/or surgery.

People may think we won’t be spending that much time at the hospital in the future, likelihood is we’ll spend more time than we ever have!

Delayed developement is just part of Jennifer’s everyday life.

Jennifer’s tiny, I don’t think she’s bigger than a 8 month old, maybe longer but certainly not fatter. She weighs 7,6 kg, and is only 77cm long.

She eats until she’s full, her weight curve has never declined……We still feed her like a baby, and we probably will continue do so for some time yet.

But as her therapists say, “just because it’s delayed doesn’t mean that it will never happen!”

One said:

“Never walk?” “Are you kidding me?” “Why?”

As she flexed Jennifer’s legs back and forward, spread her legs checking the extent of spasticity in her groin and the range of motion in her hips……

“I’ve seen much worse get up and walk, I’m 100% sure Jennifer will walk too!”‘

“She may need help, but she will walk!”

I feel like when she really wants to, she can, whether that’s pushing Emma away when she gets too close,  or pushing a button on her favourite toy to make a noise….

Whether that’s rolling half way over to throw up, or shouting mamma when she really misses her, when things need to be done she somehow finds a way….

It’s a credit to her, not us, her body just doesn’t work as it should…..

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