Kidlets and Coffee

Another day in the life…

Let’s Do This

2019 started off with a bang for us here. LN woke up on New Year’s Day puking everywhere with diarrhea. He was miserable. Thankfully it was a quick bug, whatever it was, but it definitely reminded us that a new year does not mean major changes overnight!

LE had to go to the doc because she had a severe diaper rash that would not clear up. Now, we are used to severe diaper rashes here. My kidlets have very sensitive skin, eczema, and dermatographia that means that they can get rashes at the drop of a hat. From clear skin to bleeding blisters in the time between diaper changes is not unusual here. We have a set routine to clear the rashes up (usually it is copious amounts of Calmoseptine) and that routine works wonders. (Seriously, I love Calmoseptine! It’s like magic in this house!) However, over the course of a week LE was getting worse and worse, blisters, bleeding, you name it. It was terrible. So we had to go in and get an antibiotic ointment and a yeast cream to alternate. Thankfully, it seems to be working. She does have a few spots that are iffy, plus her stoma (hole in her tummy where the g button goes in) was a bit sore but that has cleared up as well.

I was going through my Facebook memories today, and I realized that over the past 4 years or so, almost every year around this time I had a kid in the hospital for one reason or another. Last year, it was LE who was in the hospital for the first time, for Failure to Thrive. The year before, LK wasn’t quite in the hospital, but was preparing for a Fecal Matter Transplant (FMT) to cure her long 6 months with c. diff. Several years before that, LN was in the hospital following an endoscopy/colonoscopy and a pH Probe. We had to stay in the hospital overnight for the probe so he wouldn’t pull it out.

This makes me realize just how blessed we truly are. I know, sounds weird, right? “You feel blessed, knowing that you spend so much time in hospitals with your kids?” Yes, yes I do. Modern medicine has brought us so far in life. Without it, my preemie babies may not be alive. The medical challenges my children face may still be undiscovered, undiagnosed. How do you treat something you can’t figure out? LK was on antibiotics for 6 months for c diff with no improvement, yet 48 hours after her FMT she had made a complete 180. She was a brand new kid! LE is thriving with her g tube. LN was treated for his reflux and outgrew it. LB has inhalers to keep her breathing and alive. I mean, how can I NOT feel blessed?

We have an amazing team of medical professionals on our side. We have doctors who are willing to think outside the box and not just throw antibiotics or medications at us willy nilly. When I e-mail a doctor updates about one of the kids, or questions, I get rapid, insightful responses. I am treated as a member of their care team. Our Children’s Hospital is fantastic. The nurses, doctors, and staff there truly care about the kidlets, and it shows.

2019 may not have started exactly how I hoped, but at least I am on familiar ground. I know these challenges, I know these obstacles, and I know I am not facing them alone. My kidlets are incredibly strong, incredibly determined, and simply incredible. And they inspire me.

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