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, February 05, 2011

Preparing for a Halo

Tonight I've been digging around online to see just what we're in for. Fortunately (or would it be unfortunately?) I have a couple of friends who've walked before me so I can pick their brains a bit.

Axel is going to need shirts that fit on/around the halo. I found a couple of websites that sell clothes that have been altered for a halo, but they are UNGODLY expensive. (really...$75 for a t-shirt that has been cut and velcro added to it? I'm think'

Is there anyone who lives near me (Twin Cities) who knows how to sew and do all that stuff? I used to, but don't even own a machine anymore.

I'm looking for a good easel. I want it magnetic so Axel can use magnetic letters on it while we work on some school stuff. I wonder if a table top easel or a regular stand-up one would be better? Any thoughts from the parents who've been there/done that?

For those who've kids have already gone through this, is there anything you didn't have at the hospital that you wish you had? (for your child, that is.) Angela has been through so many surgeries, but never something that has laid her up this long. Although she spent the most of a winter in the hospital a few years ago, she was running around the hospital during that time!


Hevel said...

I never had a kid who had a halo, but I had been in halos twice following surgeries. One thing you might want to consider that peripheral vision for Axel will be limited, so activities when he has to be able to see a larger area will be a challenge and very frustrating. For me working on workssheets and other things directly on the table was also a challenge, but I also have a lower level spinal fusion, so bending is not easy.

I also wore a whole lot of zipper and button down cardigans. Made life easier.

Tamara said...

I figure you know everyone, but just in case, you might want to check out Katrina's blog -

Molly said...

I'm a New York girl, but I could probably sew stuff for your boy if you don't find anyone closer!! Email me at nobabynoblog@gmail dot com

abby said...

Leah, I can sew and could help you out. However, I'm wondering, wouldn't it be easier to just buy a bunch of button down shirts?

As for easels, ikea has a nice one -white board on onside, chalk board on the other. I don't think it's magnetic but you could always buy the magnetic paint and paint it on.

Otherwise, check stores like or lakeshore - i know they have magnetic easels, just not sure how pricey they are.

e said...

already told you about the spare battery for your phone, laptop charger, healthy snacks. I have the iPad, so it holds a great charge, has the communtication device on it, plus many fun apps for molly to play with.

Christina said...

Praying for you all Leah! So sorry to hear Axel has to go through this!!!!