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!"

Saturday, January 08, 2011


I've been saying for weeks that Axel's adoption and transition into our family has been way too easy, and that I suspect he's hiding some surprises from us.

You may remember on Weds Dean and I took Axel to the International Adoption Clinic (IAC) at the University of Minnesota. Among the things done was a ton of blood work to check various things, and I had asked if they would get his Xray for AAI ordered, since we need him cleared before he can have any work done under sedation or anesthesia.

Yesterday I was frantically trying to get things done in my house in preparation for a family gathering here. I have this weird little thing where I get very stressed out about people coming over. I have no idea why this is, but I just get extremely anxious. Maybe it's because I grew up in a house where my parents often entertained, and they were good at it. I am not. The fact I hate cooking might have something to do with this. But I digress.....

While I was cleaning, I walked into Angela's room to discover she had GUTTED her large walk-in closet, and all the contents were now sitting in a pile in the middle of her room, and she was at school where I couldn't even have her help me pick up the mess! I did NOT have time for this. I started getting that mess cleaned up, as the dog we were babysitting pooped on the rug in the other room. While I was cleaning up that mess, the phone rang.

It was the nurse from the IAC.

First of all, Axel's blood work came back with a very high Eosinophil count. This is most commonly associated with parasites, so we'll do some additional testing to find out exactly what and where the pesky little things are hiding. Sometimes it means there is an infection somewhere, so if parasites - which are the most probable cause - aren't found that we'll be looking for a hidden infection.

And then there is his AAI xray. Axel's xray came back showing that he has AAI. What we don't yet know is if it's bad enough to require surgery to repair it.

The gap found in extension position (tipping your head backward) in Axel's neck is 8 mm. The thing is, Axel wasn't even tipping his head back all the way. Because he was very nervous, he had his shoulders in a "shrug" position. When you do that, you can't tip your head back all the way. Put your shoulders down and your head goes back further. We suspect that Axel's gap is actually more significant than 8 mm.

As it is, a gap of 8 mm means he will never be allowed to participate in activities that could cause a jarring to his neck because they put him at risk of CATASTROPHIC spinal cord injury. This includes simple kid things like jumping on a bed or trampoline, sledding, playing soccer, falling off a bike, wrestling with his brothers, riding a horse, and a lot of other things that I haven't even thought of.

We're still trying to process this information, and also waiting to hear from a couple different specialists on what their opinion is. We know he'll need an MRI as soon as possible, and since he'll be sedated I'm hoping we can get all his other things done at the same time. But that's in MY perfect world, and my world is far from perfect.


Googsmom said...

{{{{HUGS}}}}} It will all work out. You've been in touch w/ Renee right? If you have any questions about what all the AAI stuff includes.

AddingOn said...

I learn something new everyday. I'm sorry, I know it's hard to worry about our kids safety and to have extreme circumstances added onto that is even more stressful. However he made through living in an orphanage his whole life with this condition, God is keeping him safe!
I remember you saying something about him laying with his head off the bed when he sleeps does this have anything to do with it?