A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, April 28, 2016

I don't feel my feet

This weekend I was catching up on all of my blogging.
While doing this, and writing about our neurosurgery appointment last month I was thinking more about what he told us. And had more questions about what this was and what it meant. He never used the word syrinx, so I am not sure if this is what it is or not.

I was also thinking a lot about how surprised I was that something was wrong.
It really brought back feelings of being all alone in a doctors office and being told there was something wrong with my baby. (Because of course both times I didn't think of having anyone with me).

The thought of this cyst and the potential for a spinal surgery has been on my mind for 6 weeks. I feel anxious and on edge all the time. My chest feels light and heavy and tingly all of the time. I just feel on edge. I want to lay my hands on him and heal it. I don't want anything to be wrong.
How can something be wrong when he is still his crazy-happy self!


Then Nick started complaining that his feet hurt so we took off his braces for a couple of hours on the weekend. And later that night he says to me "Mommy, I can't feel the bottoms of my feet. I used to be able to feel them, but now I can't".
And my heart dropped.

I tested. Running my nail along the bottom of his feet and got absolutely no response.
This is new.

So I emailed his neurosurgeon about my worries (I actually emailed his twice, asking some additional questions, and then again when Nick told me about his feet).
He called me and we have an appointment in 2 weeks.

I am happy we got an appointment, but I have no idea what the plan will be. Will it be surgery right away? Wait for surgery? More tests?
I am not sure. But now I want some answers and a plan.

I hate worrying all of the time. It gets better right?
(My parents say no)

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