Sunday, February 8, 2015

Feeding Tube Awareness Week

Today is the start of Feeding Tube Awareness Week!!

This is our first year.

Nathan just got his G-Tube on June 24th, 2014.

My favorite part of being a Tubie Mom is this ......... all the crazy mistakes that happen.

Okay, I'm lying, it's my least favorite part.

But seriously - how many times do you need to "forget to close the med port" before you learn??? How many times does it take to be BATHED in medicine before you finally figure out you have to check it ten times (literally) before you pour the meds in. And when the med ports take on a mind of it's own and opens on its own...

I mean - REALLY??? Then let's throw in the beeping in the middle of the night of kinked lines because they are laying on or wrapped up in the tube .... or the random mystery problems with the pumps.... or how about things are just not working and you just ... can't ... figure... it ... out.

Really - my favorite part is how well it's working for Nathan. Probably too well.

Nathan - June 24, 2014 - right before G-tube Surgery

Nathan - January 2015

Nathan's weight - June 2014 - prior to surgery .... (bottom weight is his brother Keadyn's)

February 2015 weight for Nathan .....

It's made a HUGE HUGE HUGE difference for him!!!

There are a lot of sites for Tubie kids accessories.  We got our first pads through Patchwork Peddler (link for free sample! and leads to their website) and even though we had trouble getting our initial order - we got it and they made up for the mistake :)  Which we were grateful for :)  These are amazing pads!  They are super soft on the inside (against the belly) ....   we also had fun doing trial and error washing them - because we don't have a washing machine.  So I had to learn to wash them by hand, without using fabric softener.  (Because fabric softener can actually make it less absorbent.)

Tubie Friends is an amazing organization which will send your child a stuffed animal with a G-tube (or JG-Tube, and other medical procedures) ... to make things a little easier.  We got Nathan one prior to his surgery.  You don't get to pick out the animal, it's a bit of a luck of the draw.  This is Nathan's though, he named it ARMY.
And if you homeschool you can use it for a science project!!!  Try to suspend the medication!!  I kept failing ...... not that failing isn't freaking cool too ....

But one night I got it!!!!

There is the million supplies that come with having a Tubie!!  

But it's all about the attitude!!  Make it fun!!  Keep the smiles going!!!

It wasn't an easy first 7 months ....   but it has really been worth it!

And we have fun with the bags!!

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