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….
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…..
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.
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.
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!