The operations (part 2)

The second post about Jennifers operations, the follow up and the results.

I read a few blogs about cerebral palsy, and often people comment that there is no information of the results.

Well, here they go.

In April, as many remember, Jennifer had 2 operations. A g-tube in her stomach to help her nutritional intake and an adductor tenotomy, to try to correct her hip displacement.



We’ll start with the good news…..

Jennifer’s g-tube has had a major impact on her quality of life. Her mood in general is better than it ever has been, her strength, alertness and willingness to engage with other people has never been better.

She’s not setting any world records for weight gain, but she is gaining weight evenly and the doctors are happy.

We’ve spent most of the time since the surgery trying to find out how many calories Jennifer needs every day, how much food she can tolerate and which foods we can feed her.

Originally her nutritionist had stated that 750kcal a day would be sufficient, but warned that we may need to adjust that depending on her weight gain.

Jennifer’s body is being taken over by spasticity, and spasticity needs energy, energy burns calories.

Jennifer receives about 1100kcal a day right now, and for a child just under 10kg’s she should be a big rubber ball of a kid.

She’s not, and there’s not one nutritionist who expects her to be.

Her strength is in her personality, and not even a doctor could fault that now.

New AFOs
New AFOs

She’s grown out of her old AFOs, her chair needs a bigger seat, her pram is starting to look small and her changing table is in desperate need of enlargement!

So tell me she’s not growing!

Checking the range of movement (spasticity) in Jennifer's hips and ankles.
Checking the range of movement (spasticity) in Jennifer’s hips and ankles.

The bad news however comes from the fact that the adductor tenotomy didn’t work, at least on her left side.


You can see on the above picture, that her left hip is crooked.

Between the femoral head (the ball) and the acetabulum (the hip bone above the ball) there should be no more than a 20 degree differential.

Jennifer’s is at 36 degrees.

Her adductor is so spastic that it is pulling her joint out of it’s socket.

She needs the femur bone broken, a plate but between her femur and her pelvis and screws to hold it in line.

Major hip surgery….

So young, so painful, so not deserving of this!

I referred to the adductor tenotomy in April as ” preventative maintenance.” Of which I thought in worst case would buy us time.

Time however, does not seem to be our friend.

It was only yesterday that we found out about this, and it was only Odrun and I that managed to postpone the surgery until after Christmas.

Not only can we not stomach the thought of the pain Jennifer will go through, we want to enjoy this period with her more than anything else.

She’s never been easier to deal with, life is finally a joy for her in a way that it never has been before.

She has so little, she deserves everything.

Her hip is not going anywhere in the next 6 months, in fact she could probably go years without needing this surgery.

But when it does start hurting, we’ve been told it’s excruciating.

The choices we make are for our kids, and our ourselves.

Not all of them are easy, some make you literally want to cry.

But she has proven that she can get through almost anything life has thrown at her, and she’s always come out on the right side.

I take solace in knowing that this will help Jennifer, it’s just another upwards climb on this rollercoaster we call life……


2 thoughts on “The operations (part 2)

  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.


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