Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, September 02, 2011

HOORAY!!!! It's coming OFF!!

On February 4th, 2011 we got the results back of Axel's MRI saying not only did he have AAI, but that there was impingement on his spinal cord. Our lives changed on that day.

Axel needed a neck brace immediately but it was not safe to bring him in the car given the condition of his spinal cord. Never mind that we'd done thousands of miles in the car by that time. LOL That day a person from an orthopedic place would come to the house to fit him for a neck brace. 

Axel had only been home with us for seven weeks at that time, and all the really fun things we'd done with him already flashed before my eyes. Things like sledding and going face-first into snow banks. You know, things that could have killed him?

He stayed in that brace 24/7. The only time he could take it off was for baths. He had to sleep in it because he would head-bang in his sleep, and sometimes fall off the bed.

Then he had his spinal fusion surgery on May 16th. That was a horrible day! The neck brace was a piece of cake compared to the halo.

We suffered through the summer together. All of us largely confined to the house because Axel was just too hot to be outside much in his halo. (the vest is lined with lambs wool.) So when he got it off three months early, on August 10th, we were SO HAPPY!!! His birthday just three days later, the first birthday he'd ever had in our family, was like a Re-birthday.

Getting his halo off meant he had NO neck strength what-so-ever. Because he had three months of not using his neck, he was like a newborn baby all over again. This, combined with the fact he had a new bone graft that wasn't 100% solid yet meant he was back in the neck brace 24/7, only this time he couldn't even take it off for baths! Instead we'd bathe him in it, then lay him down flat on the bed, and very carefully remove the wet brace and replace it with dry one. Its been a headache, but nothing like the pin-care involved with the halo. I'd take this any day!

But guess what? TODAY is the day we get to start weaning Axel from his neck brace! We're almost to the end of the road...almost...Check this out!


Krista said...

Happy for you:)

Imogen said...

Oh my heart!

Becky said...

Oh my gosh, he's so cute! Such a sweet little voice, he's a chatterbox!

Laurie said...

WooHoo!! Free at last, free at last!!

Tamara said...

Leah - that was a beautiful video. What great news - and how great to see that smile. Hope it's not long before you're done with it forever!