You probably figured out from my last post (or maybe you didn't!) - Kingsley is a supermodel! For real! After I posted this: BUSY Meaghan from Petal Babies sent me a message asking if I really wanted Kingsley to model for them. Of course I do! It would be wrong of me to hoard all of this cuteness for myself, you know. Amanda Kopcic was doing mini-photoshoots for fall and fit him in. I have only seen a couple pictures, but they are fabulous. The photo session was so cool, Kingsley was a rockstar (of course) and looked adorable. He got to model a few of the gorgeous hats and one cute outfit. So fun!
The pictures will eventually be on the Petal Babies website, and on Amanda's if she wants to use them.
Other than the photo shoot on Tuesday, we have had a super busy week. Therapy, playgroup, swimming, doctors appointments. I know I said I was going to start fresh and just look forward instead of back, but I've actually been slightly obsessed with looking back. And when I look back, you know what I see? Kingsley's legs moving a whole heck of a lot more than they do now. Even in this video he is moving way more than he does now. In videos of him when he was a newborn, he can tuck his legs underneath him, like a mini crawl position, and then straighten them out again. I used to have to hold his legs down a bit when I cathed him, now I can prop the bottle behind his knee and go chase Cordelia without worrying about it getting kicked or tipped.
From what I understand, after their closure surgery there could be swelling and spinal shock which can take up to 6 months to heal and therefore take that long to show their true potential. If that is true, then he should be showing more now than he did in his first weeks. For some reason, with Kingsley it's the exact opposite.
And it's not just me wanting to remember things a certain way. His PT mentioned having seen quad action before that he isn't showing now. My mom (a former PT) says she can't get him to do things he used to do. His paediatrician said today that he isn't kicking the way he used to and his tone isn't what it used to be. She's concerned, so she's set up an appointment with his neuro in a couple weeks to make sure something else isn't going on.
I feel like I'm holding my breath right now. Am I supposed to hope that something is wrong so that it can be fixed? Am I supposed to hope nothing is wrong and just accept that - for some reason I may not ever understand - his functioning level is so much higher than his defect level? It feels wrong to hope that he can have another surgery or something that will make things the way that they are *supposed* to be, especially when I don't even know if that's possible! Does it make sense?
I could ramble on and on about this forever. My mom and I do the circle over and over: why isn't he moving? maybe his defect was higher. his scar is in his bum crack. okay, so the defect was low. then why isn't he moving? No answers. Why why why why why.
I have decided to embrace the fact that I am just not an optimist. This little glimmer of hope that there may be an answer or (dare I even hope?) a way to improve his functioning is consuming me. I feel like I'm setting myself up for disaster.
Anyway. Back to happy news!! :) Kingsley is currently in a photo contest on the Petal Babies facebook page. If you have facebook, mosey on over to the page, LIKE it and then put VOTE under his gorgeous photo. While you're there, you may want to check out another gorgeous face you might recognize. ;) Kingsley thanks you muchly!