Sam’s dilation went well. His esophagus was VERY strictured (narrow), almost shut again. The dilation was definitely needed.
As in the past, as soon as Sam gets dilated, his spitting and retching almost instantaneously stop. These are usually the tell tale signs he needs a dilation. Unfortunately, there isn’t anything else that can be done, except put him under anesthesia, and stretch his esophagus.
As of now, surgery will wait to hear from us. IF Sam gets symptoms, they will put him on the schedule as needed. With Sam’s thirty-five plus esophageal dilations, we’ve only been wrong once. There are many, but one great thing about Sam’s care team, is they trust our judgment. They listen, really listen to us. I call the surgery scheduler, who I’m on a first name basis with, and they get him on the surgery schedule ASAP.
We are going to believe Sam won’t need as many dilations as the first time, and even better, he won’t need anymore.
I’ll leave you with a moment from a day in the life of Superman Sam. You just can’t make this stuff up!
We were sitting in “school” with Sam. When Sam does distance learning, we prop his iPad on the kitchen island and he sits on one of the bar stools. I usually stand next to him. His nurse will stand or sit on the stool on the other side of him. All of the sudden, I thought I noticed something about Sam’s mouth. Does he have a missing tooth?!?! With Sam’s camera on, I didn’t want to disrupt school.
As soon as school was over, Sam’s nurse and I pried open his mouth. Yes, we had to do this. It’s the only way to be able to see inside his mouth. Yep, I saw it right the first time, a bottom, front, tooth, MIA! What?!?! Where did it go?!?! Did he swallow it?!?! Was it in his bedroom somewhere?!?! How did I not know he had a loose tooth?!?!
Mom guilt, setting in. And then, that good ole self talk. Stop it!! You have a lot more things to keep track of in the world of Sam, then a loose tooth!!! It’s not a big deal!! He’s clearly okay!!
Mom guilt. Raise your hand if you’re a mom and have had mom guilt recently. Okay, I’m feeling better already. It’s so silly. Why do we do this to ourselves? Because, we’re human.
Give yourself grace mama. To me, giving yourself grace is acknowledging the situation, doing what you can to rectify it, then moving on, and letting it go. It’s knowing, we are not perfect.
From the mama with typical children, to the mama with special needs children, to the mama of a prodigal, and everything in between, give yourself grace, because we all need it, every single day.
Faith Over Fear!