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High Needs Mom Life

How can I??

Cerebral Palsy· LittleMiss· Mom Life· Selective Dorsal Rhizotomy

1 Oct

My fingers have hovered over the submit button a number of times over the last few weeks, yet I can’t seem to bring myself to hit it.

How can I??

How can I knowingly ask for my daughter to be put through the most excruciating pain of her life?

How can I push a button and ask for a doctor to cut into her body?

How can I??

But how can I not?

How can I deny her the possibility of a higher gross motor function? Of the ability to do more on her own? To not have to wear AFO’s forever?

One of the main considerations for our big move was the possibility of Selective Dorsal Rhizotomy surgery for LittleMiss. Or SDR. It’s done at St Louis Children’s Hospital and is amazing for children with Cerebral Palsy. It’s also not something to be taken lightly.

I’ve had surgery before. I’ve had four jaw surgeries before and a c-section when LittleMiss was born. It’s not fun. It’s not something I enjoyed, it’s not something I want to put LittleMiss through. But when we could increase her gross motor function goals from the gross motor function of an 8 year old to that of a 12 to 14 year old! That’s a BIG difference.

These aren’t the decisions I anticipated having to make when we started our parenting journey. I thought we’d be choosing between pampers and huggies, or rice cereal and oatmeal. I didn’t ever expect to have to choose if and when to have doctors see if they can make my daughter’s brain communicate with her legs better.

I am in awe of the fact that they can do this. That they can go through her spinal cord and figure out which of her nerves are not communicating properly and causing her spasticity, and sever them. So then the rest of her nerves will take over and she’ll have closer to normal motor function. I am so thankful that this is an option. And that our move makes this an option for us. And that we had conversations with our doctors in Canada about the timing that works best for us.

But for now I work on the courage to press submit on the button to have St Louis evaluate us.

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