A little “Ash” Wednesday for you today 🙂 .
Today, our superhero…
…is having procedure number 17.
Ugh. I mean…what is there left to say?
We go, we get it handled, we come home, we get sick, we get better, we conquer and then mentally prepare to do it again.
A lot has been going on in Ashby’s little world lately, so I thought I’d share an update. About a month or so ago, I mentioned that she is now also going to occupational therapy. Friends, I had no idea just how much she needed it, and I am FOREVER grateful that we are doing it now. We spend so much time and energy focusing on her right hand, that her poor left hand has been neglected. Every time we visit the doctor (and she has three doctors who treat her), we all stare at that right hand, analyze the right hand, discuss the right hand and meanwhile, the left hand has been, well left out. But now we know, the left hand needs some help!! Over the weekend, we even had some specialized testing done through a diagnostician and the results were…we need some serious OT to help sweet Ashby out.
Here’s the problem: she is right handed, but due to her Klippel-Trenaunay Syndrome, is forced to use her left hand for most things…but she’s still a right handed (therefore left brained) person. Which means, if you give her a letter to trace (like on a note card), she’ll use her right pointer finger to trace the letter, but then hand her a pencil and she’ll use her left hand to write the letter. Apparently, that is very confusing to her brain and really makes things very difficult. So, we are going to need lots and lots of OT to help sort that out. It’s so wonderful that she’s able to use her right pointer finger (that’s a huge praise!), but it’s conflicting with her left hand (that she really needs to use all the time). Does that make sense?
We are in love with her occupational therapist, so I know that between all of us, we can get this conquered, but it’s just another facet of the syndrome we were unaware of/unprepared for/uneducated about. KTS affects people in many different places and even though I’m connecting with so many people with KTS and/or parents of kids with KTS, so many of them do not have it in their hand/arm (and even if they do, it might be affecting their non-dominant arm, so this wouldn’t apply), so we’re learning.
We were in the car driving home from Smith’s baseball game the other night, and we were in two cars. Andrew had the bigs and I had the littles. It was really dark outside, and we were cruisin’ down the road in silence when Ashby said, “Mom, am I going to have a special arm forever?”. I told her that yes, she would, and she said, “Well, how I am going to hold my babies when I’m a mom?”. Out of the mouths of babes, friends. I don’t talk about this a lot, but really the fear is that Ashby won’t keep her arm. It’s such a sobering reality that unfortunately, we are faced with every day, so I just pray for miracles, I pray for the advancement in medicine, and I pray that God continues to give her such a fighting spirit with a positive heart. She’s fierce. I pray that never goes away.
Okay, I’m sobbing at my desk now. I better sign off. Prayers appreciated. xo