Ducky Diaries: 1-09-15

Thursday, January 15, 2015


Friday the 9th Bear went to his appointment to receive Botox injections into his legs and hips. Botox has shown to be highly affective for children with Cerebral Palsy. It basically fills and stretches the muscle groups that are tight and or seized up, as is common with CP.  It can also help to numb nerves that are misfiring and causing pain.

We were hopeful but also skeptical because for some children it doesn't do much at all.....

Each "X" is an injection site.  It was not a fun experience, at all, but within hours of being home we started seeing his feet relax from their usual pointed toe pose, his sitting was more controlled.  We had been told not to expect to see any results for 4-6 days so I was beside myself.

It only continued to get better the next 5 days days. I could take pictures of Bear and get an adorable shot the first attempt, as opposed to the normal 15 blurry pictures before getting 1 decent one.  He sat so still. His legs were able to be stretched out. He wasn't falling in every direction and hitting his head.

I was raving all the praises of this miracle drug!!!!

And then, just like that, Day 6 hit.

I watched my beautiful son go from crawling and playing to dragging his knees and feet behind himself while pulling forward with sheer upper body strength and then to rolling across the floor.

The world stopped. Tom and I stared.....

Bear learned how to crawl a few days before his 3rd birthday and hasn't looked back since. We haven't seen rolling in almost a full year. And yet, here he was rolling to get to his basket of toys.

I begged him to crawl to me and he wanted to desperately.  His eyes held so much confusion. His hips out stretched and his legs splayed beside him. He couldn't get his bottom half to do what he wanted it to, what he knew it should do. My heart shattered. How do you explain to your 3 year old that the medicine you thought was going to help him is working too well. That he's too stretched out?
How do you explain the fact that his only mobility has just disappeared. At least for the next couple of months until the Botox wears off? 

And just like that our miracle drug became a nightmare.

No one warned us about this possible side effect, no one mentioned it. Not even in passing. So what now? 

Those were my thoughts last night while I watched my child yet again attempt to drag his body over to his toys. Breathing so heavily he was over working his lungs. His eyes so confused as to what the hell was happening to him.

After bed time I admitted defeat and drank an entire bottle of wine to myself while Tom drank some beer and shot some people on a video game, because quite frankly we both needed to detach ourselves.

We felt like we had let our trusting child down. So completely. 

I don't know where we go from here. Honestly I don't want to go anywhere from here.  I'm hoping that this is just a glitch and after a week or so things will get a little more close to normal and Bear will regain the ability to crawl as he adjusts to the affects of his Botox treatments and that I will go back to singing it's praises.

But for now I'm just going to look at this and laugh because it's "literally" perfect at the moment.
And I'm going to look at this because it makes my heart happy.
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