Amy has been a lot better. She been on her feet, running around. She’s been thrilled that her cousin is visiting. Her wheelchair is back in the garage where it belongs, for the most part. She plays and has fun like a regular kid… until she doesn’t. Then the screams and cries start, and she ditches the brace, and begs for pink medicine (Tylenol) and yellow medicine (lotion). She sleeps in our bed now, so we can attend to her in the middle of the night.

Then last night happened, and it was a repeat of Tuesday night. Amy’s Dad and I didn’t get to sleep until after 4am, because we just couldn’t get her comfortable and back to sleep. He reminded me that I need to hold it together in front of Amy- and he’s right. I have to be brave and bury my emotions because she’ll feed off me and it will be worse for her.

I hate this. It’s so unfair- why does she have to go through this???

We finally got her calm enough to watch Peppa Pig. The room grew silent again, as we breathed in the silence, and were able to slightly relax.

In this moment with no food to make, no relatives to prepare for, and nothing to clean, we finally had a chance to talk about surgery. Neither of us want to subject her to another procedure, but feel that this small outpatient procedure may stop her from having a larger procedure later. Plus, if we can get her healed at the bottom, then we can move into an articulated brace, which we feel will benefit her most in the long run.

Decision made, we settled in for the rest of what would prove to be a very long night. I can’t tell you how often her screams woke us last night, but we did our best to keep her medicated, calm her.

This morning, she awoke happily, found Tinsel, our Elf on the Shelf, ate breakfast, and is happily watching cartoons. For now, she’s happy and comfortable. At this moment, that’s all I care about.

She screamed, we ran to her, medicated her, massaged her, and she calmed- fairly easily. Then a brutal realization has hit us both. Seeing her like this? This is why so many parents choose to amputate. ?

Next Post
Previous Post
Categories: Life with CPT

error: Content is protected !!