The operations

Ever since Jennifer was 6 months old we wondered if she would need a G-tube.


That time has finally come, or more correctly, that time is overdue.


Jennifer followed her weight curve right up until she was about 16 months old.

It then flattened out completely.

I think she weighed around 7,5kgs, she was never fat and she was always eating just enough.

When we then, 4 months later discovered she had not been putting on weight we sought advice.

We then proceeded to add everything we could to her already limited diet, canole oil, extra milk in her porridge, extra everything that wasn’t unhealhty.

We tried sandwiches watered down so they were soft enough not to have to chew, we tried weetbix, we tried different fruits and we blended everything else we could in the blender….

Nothing worked, she just didn’t put on weight.

Jennifer can’t chew, and you can imagine having food put in your mouth that needs to be chewed before swallowing and not being able to chew…..

She panics.

And what she couldn’t chew, but could still swallow she would get wind from.

And what she didn’t get wind from, would make her consitipated.


It’s not for a lack of trying, it’s just the way it is.

She weighs 8,5 kilos.

She’s never been so thin.

She hasn’t slept through one night since Decemeber, she’s hungry poor thing.

I’ll admit that the thought of a G-tube for feeding her made me feel like we had failed.

But like everything else, it just takes time to adjust to the thought of it.

And now I’m looking forward to it.

It makes life easier for everyone.

Woke up fairly rough this time...

For all of her smiles and laughs, she’s still very unsure when she’s in a new place.

It’s hard to feed her when we’re out, she just doesn’t feel safe.

It gets better with time, but when you’re already underweight you shouldn’t go a day without hardly eating.


Jennifer creates a lot of stress, for herself and for us.

This is just another one we can all cross off the list.

The procedure went well, and they took a gastroscopy while they were at it.

Everything on the inside looks fine anyway.

In the space of three days she’s had 2 operations and some more botox.

The other operation being the aductor tenotomy.

There is a risk of hip displacement in children with spastic diplegia cerebral palsy.


Jennifer is already at risk.

Her hip joints are already growing out of alignment, and there is a risk of major hip surgery later in her life.

The procdeure was to cut her adductor muscles on the inside of her legs, and stretch them by using a swash brace.

It obviously wasn’t planned too well, cause the swash brace put pressure on her g-tube.

Instead she’ll wear a cast, one that we can take off for bathing etc.


She’ll have intensive physio therapy for the next 6 weeks.

It’s not going to be a fun 6 weeks, the extra work it creates, the pain, the crying….


It’s all worth it just to make her smile.

And she’ll be ready for our trip to Australia in June, her first!

It’s always an experience being at the hospital, there’s always something to learn.


There’s never a naughty, misbehaving whinging child here…..

There’s only well mannered, thankful happy kids.

There’s alot of love between the sicknesses, there’s alot of respect.

Amongst the never ending obsession of perfection in what we call our society, it makes me wonder if we as parents really appreciate our healthy children?

Jennifer’s taught me many things, but the most important has to be that.

And without sounding arrogant, I hope she’s taught you that too!


2 thoughts on “The operations

  1. Hi, I stumbled upon your website a few days ago and have read many of your post. My daughter was diagnosed with spastic quadriplegia at age one and is now two and a half. She has a twin sister which is great, but also difficult for as they have gotten older the differences have become more evident. I had so many of the same thoughts and feelings that you have expressed through your post. The real reason I am writing is because of the surgery your Jennifer has had. I am not sure it is something you want to look into, but we had a surgery call SPML and saw really good results with the tightness in her legs. It was a quick and simple surgery and she was back to therapy again in three days. Her arms still have tightness, but I can’t believe the difference in her legs. She can now put her legs around our hip when we are holding her, which before was tough with the tightness. Before the surgery she was scissoring her legs quite a bit, but it hardly happens now; which is alot less pressure on her hips. There are only two places in the United States that do it, lucky for us, one is only an 1.5 hour drive from our house. I am not sure if it is available near you are not but I thought it was worth mentioning it. We looked into alot of options and this was by far the least invasive and the results have really been noticeable.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s