Saturday, June 23, 2012

Adapting to life...

So it comes as no surprise that when you have a special needs kid, you have to adapt them to our world.  You have to keep an open mind about what you can do for them, and for yourself, to make life easier.  I do this all the time and usually post about little things I've made or done.  Well, I did a LOT this week!

First, I started making comfortable hospital gowns.  Not that we are expecting Charlie to get ill any time soon (she's been doing really well!), but she does inevitably end up in the hospital once in a while.  When she had her trach placed, they had a new rule....all patients must wear a hospital gown.  This came about because some 17 year old kid wore his street clothes and just walked out and nobody noticed because he looked like a visitor.  It's not like *Charlie* can manage that, but whatever.  I'll play along.  BUT she needs to wear comfy gowns!  Usually when she's inpatient it's for an illness that involves a high fever and their hospital gowns are made of this flannel-y, fleecy stuff.  No thanks!  So I'm making 5 or so of these that tie at the neck and back and snap up the arms:

Then I got tired of forgetting something important every single time we leave the house, so I made a back seat organizer to hold little (but very necessary!) things...from left to right and top to bottom we have...tubie supplies, an extra spit rag, suction supplies, HME's, diapers and wipes, and a change of clothes:

I have the big jogging stroller nice and usable now, but guess what!?  It doesn't fit in my car!  At least not easily.  In order for it to fit, I have to fold part of my back seat down (it's split in an odd way) and squash Adrian and Charlie's seats off to the side.  Then I'd have to tie it down with something so it doesn't become a projectile...let's just say I'm not thrilled with all of that work.  So I got to work on making her Chicco Liteway a little more Charlie friendly.  The main issue I had with this stroller is that it's crotch strap is set very close to the back and so it wraps up and around her crotch, making the waist straps dig into her thighs badly.  So I got out the seam ripper and got to work!  I sewed it back on about 3 3/4" further out and now it fits great!  I also added a pool noodle footrest since the footrest on it is too far back and little high.

The only issue with this stroller is that it can't handle the suction machine and the vent at the same time.  We're working on a better oxygen set-up so we can do either the oxygen OR the vent depending on the day and her needs.  As long as we aren't going far, I can sling the vent over my shoulder, but it's not very fun!

This morning I woke up with it in my head that Charlie needed a swing...NOW.  I must have had a dream about it or something, but I don't remember.  All I know is that I had to do it and so I sketched some stuff out, googled it, sketched some more, drove to Home Depot, picked the retired old guys' brains (they were thrilled to help out with such a fun project!), bought the stuff, managed to fit 4 ten foot poles in my car, drove home, got to work, and 3 hours later, Charlie had a swing.  Easy peasy right? LOL

Yup, that's a car seat...see, it IS worth it to have extra car seats laying around!

She loves it!

I have more plans in the works and I'll post about them when they are finished!


Anonymous said...

You are so crafty! You're so beyond crafty, actually, I think making a swing out of pipes for your special needs child is a whole new category of crafty. Charlie is a very lucky little girl!

Sara said...

smart about the gowns with Madi's sensory issues the normal ones are too itchy my amazing mother in law sewing godes made madi some adorable 100% cotton gowns. With her heart condition and Crohn's Diesese in addtion to Downs Syndrome she is in the hosptial alot.She has an ear operation next month to help the fluid bulid up. Ear tubes hasve not helped.

Rebecca said...

You are freakin' genius! I love how you get an inspiration and make it happen. The product not existing or lack of funds doesn't stop you!

Cartter said...

How do you have her car seat strapped

Cartter said...

How do you have her car seat strapped