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!"

Sunday, May 22, 2011


We are HOME and even more importantly, we are NAPPED! Well, Axel and I are anyway. ;-)

I have nothing but high praises to God for not only getting us all on the same flight, but getting Axel and I in first class! God is So GOOD!

Axel cried about 1/2 the flight. Sobbing tears kind of crying, which is very unlike him. He was grabbing his hip, and it was hard to keep him sitting in the seat because he kept arching his back, making his butt slide out from underneath him. My guess his he was having spasms in his hip, making him absolutely miserable. We had given him valium right before the flight, which finally kicked in about 3/4 of the way. So, by the time we got home he was quite goofy...headed the direction of naughty...which landed him in bed for a nap.

That nap had us making a list of things we need. #1 being a bedrail, #2 is a wedge for his bed. We put him on pillows and stuff for his nap put he's just not very comfortable.

Here's a video of him eating dinner tonight. As you can see, his field of vision is very limited now. (it will improve a little bit as his pain lessons and he learns to turn his body) But looking down is not doable. If his OT is reading this, I need something better than this cake pan to raise up his plate, and maybe some dycem to keep his plate in place better?

So, we are on to new things now. This week will be spent improving his balance and increasing his ability to walk independently. It will come just takes time. The bigger they are, the more difficult it is to overcome the top-heaviness created by the halo. Axel's surgeon told us that adults sometimes take up to two weeks to even be upright, and a couple more to walk independently without the aid of a person or a walker. I have a video of him walking yesterday, but the nurse didn't see that I was recording (something about holding the camera up in front of my face made it tough to see this) and started asking me questions about our insurance.


Mel said...

YAY for being home!! Way to go Axel!! You are doing SO good siting up and eating, even with the limitations!

Imogen said...

Welcome home, beautiful boy!