Blogging about life in Minnesota, raising our five 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!"

Tuesday, August 09, 2011

Here we go!

This morning will be crazy busy! I need to pack three of us: Angela, Axel and me. I could have done it last night, but that darn sculpy clay was calling my name, and at 12:30 a.m. I was putting pieces in the oven. So, back to packing....

For the first time in 3 months, Axel will get to wear NORMAL clothes. You know, clothes that I have not cut apart and velcro-ized to make them into halo wear?  He doesn't even realize this part but I am oh so excited! He has only had three shirts to wear with his halo. THREE people!  I had bought some fun summer stuff for him before his surgery and he'll finally get to wear some of it. He'll be all GQ and stuff. I'm going to have a hard time deciding what to bring with us for a whole two day stay. LOL


And baseball hats! He'll finally be able to wear his beloved baseball hats without perching them on top of his halo. 

And backpacks...oh how this boy loves a backpack, but they don't work with a halo.


After dropping Angela off with her dad, this afternoon Axel and I will head to Philly where we'll meet up with our good friends Colleen and Nolan!! We'll hang out at their place for the night. Nolan and Axel have a lot of fun together! Then Weds morning is the big day! We arrive at the hospital at 6:30 and he'll probably be done and ready to leave the hospital by 8:30-9:00. WOOT WOOT!!!!

Today I got a tiny glimpse inside the back of Axel's halo vest. OMG it's BLACK in there! Like dirty, gross, and black! He's gained weight since it was put on and I can't get my hand in there anymore to clean it. Just think...three months of not bathing. Who knows what's growing in that thing? It's GOT to have bugs in it or something; it is that nasty.

Because we can't get them pulled up under his vest, his pants have to sit low on his hips. That means there's always a gap between the waist of his jeans and vest where his belly peeks out. Guess what? He has a little belly poking out! It's too cute, and whenever I see it, I have to tickle it. It BEGS to be tickled.

Please keep us in your prayers today for safe and uneventful travel, (functioning landing gear and all that stuff! Oh, just realized I never finished that post. Oops!) and Weds for a safe sedation. I'm sure it will be just fine, and I'm an old hat at this stuff, but still....

See ya soon with halo-free pictures!




4 comments:

gillian said...

Prayers!

Kathie Brinkman said...

Yay! Sending prayers and good thoughts your way. can't wait to celebrate with you once you're home.

Becca said...

So exciting! Good luck, and congratulations to Axel!! Curious to know about the 'functional landing gear' remark, though...

dottie said...

Good luck Axel. Hope you will enjoy your new "freedom"once you get home. A Happy Birthday to you too.

Dottie from Texa