Our New Normal

New normal 

Our new normal - 400 ml saline, 20 ml glycerine everyday. 1 hour per day, 7 hours per week, 28 hours per month, etc

It’s kind of a shitty new normal. Who really wants a tube up their ass for 30 mins a day & then sit on a toilet for that long or longer but that’s Carson’s reality. Trust me if we could have something cut out of him to make it better we would. What parents are pro surgery? Parents that have gone through 7 years of this + surgery. I feel like surgery instantly fixes something, this back & forth is tougher. But, this back & forth is real life. One day you are doing great, the next you aren’t. 

Here is what people may not realize or want to talk about, poop is life. You will literally die if you don’t go, so welcome to our world. Making sure your kid can poop is kind of important. 

And can I say one more time this sucks. I’m trying to adjust to this “new normal” & still struggling some. Carson, he’s a trooper. He’s the one going through it all & just gets right in there when we say it’s time. Hunter brought books in the bathroom the first night for him. Now she just sits right outside the bathroom waiting for him to be done. Coming in & out to check on him. He watches Fixer Upper or Property Brothers & asks how much longer he has. What’s amazing though is how great it is working for him. He seems to feel so much better & is having 0 accidents. The otc enemas we were using were causing more harm than good, so thank God we came to Cincinnati if just to learn that. Anyways, I’ll post on that whole trip later. I will just say, I’ve been feeling extremely overwhelmed by our new lifestyle, mostly because I think of how restricting this might be...but that’s how it goes. Things you think are tough at one point, you’ll look back on & can’t believe you stressed about that. We used to do irrigations & dialations so this should & will be a breeze. We are ready for life to calm down & just feel “normal” again & we are so close.

Carson with Stormi, a bear a friend made for him while he was gone❤️

The entire reason for our trip & so worth it.  Making Carson’s quality of life so much better. 

Hunter waiting for her brother ❤️