On Tuesday, December 28, Katy had her right heel cord lengthened at Shriner’s Hospital here in St. Louis.
She has been in a cast just below her knee ever since. And, once again, our concerns on how she would react to a cast, on how she would deal with the pain, on pretty much everything, turned out to be pretty much nothing. We gave her pain pills the day of the surgery and once more the next day – not necessarily because she needed them even, but because we didn’t want her to have any pain. With Katy, we have never been able to get her to understand what exactly we mean when we ask her “Does something hurt?” It just doesn’t really register with her. By the end of the second day, though, we didn’t seen one sign that she needed another pain pill. And we haven’t seen a sign since.
Within three days, she had stopped noticing the cast and went right back to getting into everything around the house again. The only difference now, at least, is we here the “Clump, clump, clump” as she puts the cast down while she’s scooting around. The only true problem we have right now is that the cast slides out from underneath her when she’s trying to put weight on it.
She’ll be in this cast through Jan. 17 and then the doctors will decide if she needs to be in the cast for another three weeks. (I’m inclined to believe that she will be considering they told us six weeks in a cast when we first started going down this road.)
She is truly an amazing little girl.
Throughout this whole experience, one thing will forever stand out for us. After we brought her home from the hospital, she slept for much of the time and ate practically nothing. So, around 6:30 pm, we took her out for ice cream. I think I’ve talked on this website before about Katy’s absolute intolerance for medicine. ANY taste whatsoever and she will gag the entire thing up. With no true idea of whether or not she was in pain, we crushed her medication up and put it in the ice cream. She caught on pretty quickly after a few bites, but we did get pill inside of her – and we were in for one of the funniest nights with her of our lives. Our little girl has never been so talkative. She tried to repeat anything anyone would say – far more than she usually does. By the time we got back home, Katy was yelling her version of “That’s Sweet, Dude!”, and would then dissolve into giggles for the next 10 seconds. Repeat.
Ah, yes, the wonders of medicine.
Hello, I wrote to your family earlier, but don’t know if you got it, I didn’t reply on the blog side, my son has a 6deletion as well,I tried to take your survey But couldn’t open it? I have so many questions, as we are thinking of going to Mayo clinic ourselves? I would like to know what is even possible there? We are just starting this journey tristons only seven months old, thanks for sharing tabby searcy
Tabby-
I just replied to your letter from before Christmas – I’m so sorry to have kept you waiting so long. If anybody knows what it’s like to just want someone to talk to about this kind of stuff, it’s me and Michele. The survey has really been a pain in my butt! I can’t seem to get it to work correctly. Oh well, I’ll keep trying.
As far as Mayo goes, I have two answers for you. First, honestly I don’t really know what they’ll be able to do for you right now besides one of the things they did for us – get your information on file with them. After that, the biggest thing they were constantly looking at with Katy was “Is she still progressing?” For Katy, the answer is yes. Slowly but surely, she’s improving across the board. I don’t know if Triston is old enough for them to get answers to those questions. If I were you, I’d call Dr. Jay Ellison, he’s the geneticist at Mayo that we met with at 1-507-284-8208 (his secretary’s number) and talk to them. Ask them what they think.
A big part of our trip to Mayo was getting an idea of how our local doctors here in St. Louis were doing. Would the Mayo doctors agree with their treatments? In almost every case, we were already on the right track. That was a big relief for us. I don’t know if that help ease your mind at all.
Please let me know whatever questions you have. I promise I won’t take this long to reply next time!
todd
I’m glad to hear the surgery went well. I’ll keep my fingers crossed for her to heal quickly.
Thanks Julie!
Hi Todd! I’m so glad the cord lengthening went well. I’m curious to hear if she is still in a cast? Evan got his removed after 4 weeks post tenotomy (but his was for Clubbed Feet, so healing may be a little different). Someone in a group I was in suggested those sticky tub dots for the bottoms of the cast to keep it from slipping, so I don’t know if that would work–assuming it’s still on.
Tabby– do you have Facebook? There’s a Chromosome 6 Group on Facebook and on Yahoo! as well! With more families since you are new to the journey. I’m sure Todd’s already shared that with you, but just in case… 🙂 Welcome to the ‘family’