Abby changed Leeyas's gtube/tutorial

This is what the AMT mini one balloon button looks like. 

The balloon is what holds the gtube in the stoma .

Abby did her first gtube change (without any help) on Leeya tonight!!!  I'm so impressed with how well she did.
I'm also kinda laughing inside. She is only 10. So many people (adults) get nervous about Leeya's gtube. Its hard for them to believe that its actually quite simple to replace.
I do get it though. I remember being so scared when Jaxson got his gtube placed. Its almost impossible to screw it up though.
Changing the button still is dreaded. Its a little gross and neither Jax or Leeya like it. They cry. It doesn't hurt, it just feels weird. Typically, I change out their tubes every 3 months (or sooner if they pull it out....I have very active kids)


Here's a little photo explanation on *How to change a gtube*.

1. Get your supplies ready. I have the spare button covered in  lubricant, an empty syringe, a syringe with 4ml water, paper towels, baby wipes (out of view) and the plastic blue tee (its an amt mini one thing). 

2. Insert the empty syringe into the side port of the button.( It actually says "BAL" on the spot, so you cant forget. ) Pull out all the water. 

3. Pull out the button. The hole you see is called the stoma. It is the entry to the stomach and does not need to be sterile. It doesn't hurt, but some stomach contents back out. Kinda gross, but no grosser than a little vomit. That's why we use paper towels. Before inserting the new button, we wash the stoma off good.It does close FAST. If a new button isn't inserted quick, it will close. Which the requires either a painful dilation or a new surgery. Some people claim the stoma wont close for an hour. In my experience, it starts closing up almost instantly.

4. Once you wash off the stoma, stick the new button in. Its seriously THAT simple. Just push the stem with the balloon deflated right on the stoma. You may feel a bit of resistance, but its usually because the kid is tightening the stomach muscles. You cant screw this part up. The only place for the new button to go is in the right spot! I'm sure there is a rare occasion that this hasn't gone smooth for someone, but Ive never heard of it.
Once its in, insert the syringe with the water in it and re inflate the balloon. 

And..................Its over! :) The only thing left to do is kisses and snuggles!

My first blogging experience.....

Tonight I was lecturing my oldest son, Ty. I was trying to explain to him that THE WORLD OWES US NOTHING. It's very easy to say that, isnt it? But honestly, for some reason we all feel entitled to have the perfect life. I am at fault too for this most definitely. 
Life isnt fair. Its not fair that I am a single mom now trying my ass off to raise 5 beautiful kids on my own, all while their dad is playing house with his 20 yr old girlfriend. Its not fair that we are drowning in debt and I have no idea how to fix it. 

It royally sucks that my oldest son Ty has dysautonomia and that I have to watch his fluid intakes and calories like a hawk. It sucks that the mere act of standing up gives him tachycardia. 
It also sucks ass that my 10 year old has crappy endurance and so many muscle aches that she cant keep up with her friends and had to quit the activities she loved.
It blows that my 8 yr old is dependant on meds to get through her day because her ADHD overpowers her. 
I hate that my 4 yr olds stomach no longer works and all his nutrition is pumped through a tube into his intestines. And my 2 yr old has the same, but not as severe. I have no idea what their future holds and I live in fear that they will get worse.
I hate my life some days, to be perfectly honest. I hate setting up feeding bags, draining stomach contents, passing out meds, checking vitals. I hate that having prednisone in the house is more necessary than a bandaid. That Id actually need more fingers and toes to count up the procedures and surgeries my kids have had. My house is always a mess, there will never be enough time or somedays... days are too long and its too much time. My kids fight too much and I yell too much. It's just not cute here like it's cute on Full House. 
Ive always wanted more. More fun, more memories, more traditions. MY kids would get along. MY kids would be perfect. MY kids would be the best damn kids in the neighborhood. 
Guess what? That never will happen. 
We do dance parties and crafts and day trips. I tell them I love them every.singe.day. Even when I am so mad at them and I want to just throw them (I never actually do throw them), I remind them that I love them. But yet, they feel cheated. They want more.

In reality, we get what we are handed. My kids are the way they are for a reason. I cant change the situation (nor would I change any of them for the world). I CAN change how I react to it. Id say most days, we all do well. Im sure though, we can do better. 
Its been a rough few days here especially. Everyone is going a little nutty. The kids have been fighting, the house is trashed, Im just totally out of energy. Its easy to feel sorry for myself on days like these. I can see why my son was feeling sorry for himself. Life isnt as easy as it "should" be. 
I KNOW things could be worse. Ive seen it. I have friends Ive met in the special needs community that go through MUCH worse.  Our family really is lucky. I guess I compare it to when I get a call from a friend. Her baby has an ear infection. I understand that ear infections suck. Ive been there. But at that moment, I want to scream. ITS JUST AN EAR! Im certain I have friends out there thinking, its just a tube, its just an airway, its just ADD. I get that. I know it could be much worse. I just wish I was the mom calling about the ear infection. 
After my lecture/yelling/discussion (whatever you'd call it), I realize that although my kids have adjusted to this chaos quite well, they still need me to be strong and help them learn to accept things. In order to do that, I need to learn to accept things better. Im still not completely there. Im going to try harder. I have to.