If you're a mama to a cutie with spina bifida, you know their unique bodies are a complete mystery, and they keep us on our toes!
Add club foot to the mix, and it can make Mama a hot mess trying to keep up. Or maybe that's just me.
I can't say enough how grateful we are for families who have paved the way and are a priceless resource and encouragement to us!
You know those times you think your kiddo might be sick enough to go to the ER in the middle of the night? And then you begin to doubt your judgment. And finally you decide to go. Then punkin' seems to improve on the way and you really start to question yourself. You been there?
It's kind of like that every time I see changes in my kiddos' skin or in their gait, especially when they have limited to no sensation. So far my gut has served me well, but not without the help of my mama friends who get it. I'm texting pictures, wondering if I'm overreacting. Self doubt? Yep. Second guessing? Yep. Even parenting for 28+ years doesn't change that.
But then for a split second I think, what if I can trust my gut. Because on this we don't want to be wrong!
I'm blogging as we are home bound .
One week ago, as in only 7 days, Kaison had what appeared to be a blister on his right heel. We've dealt with sores on these tiny tootsies before, but this was new. So that very day we asked his physical therapist to take a look and give us direction. She wasn't concerned, so we stayed the course of daytime AFOs and boots and bar at night.
A few days later the blister opened so I didn't put BnB on at night in case that was the problem. I was so proud of myself when I realized that little man's right foot was slipping out of his orthotic, but my gloating didn't last long after asking his PT to look again and she didn't agree. She didn't recommend any changes.
The very next morning our little treasure's heel looked like this:
We were shocked! Thank goodness I was able to text a photo to our nurse, just to determine if he needed to be seen. That day he was prescribed antibiotics and a follow-up. Our orthopedic surgeon in St. Louis, Dr. Dobbs, wanted to see Kaison as well after seeing photos, but his staff knee it was a long trip for wound care.
Meanwhile, a good friend we met in the club foot world shared contact information for her kiddos' PT who is an expert in wound care. She happens to be in Wichita and doesn't take our insurance, but her years of experience and concern for the state of Kaison's wound after seeing photos warranted a trip. She could see us at 8 pm Thursday.
At 5 pm we left home, drove into an ominous storm with lots of lightening and hail, and arrived at her clinic at 8:05 pm.
Within two minutes of arriving, we knew we'd made the right decision.
Kaison has a stage 3 or 4 pressure sore, and will not be back in his orthotics for m.o.n.t.h.s!
We always worry about relapse when he's out of his orthotics, but healing this wound is most important.
I am so thankful for friends who have experience, friends who are nurses, and friends who pray! And I praise God that He never loses sight of us!
Mamas, trust your gut. And your tribe💜
