- Mosaic Trisomy 16
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- Nathan's Story (Noah cont)
- Noah & Nathan's Stories Continued
- N&N's Stories (2013)
- N&N's Story (2014)
- N&N's Story (2015)
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- Noah's Milestones
- Nathan's Milestones
Thursday, February 12, 2015
I follow many many Autism pages on Facebook. Autism Will Not Define My Son's page shared this, which came off a blog by Rachel over at Finding Joy. I copied the words, and am adding photos of my kids, like she did her son. Hop over there and check out the beautiful pictures of her boy too, and send some love for this amazing piece!! I added a few of my own at the end, and apply this to not just Mom's but Dad's too. Being a Parent is hard, and you are ALWAYS second guessing yourself. (A lot of these are very much Mom related though - lol)
Sunday, February 8, 2015
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.
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!!