Saturday, March 23, 2013

Hand Hiatus

Yesterday we went in for a checkup on Sidney’s right hand. I try to update every time we go, because I see the hits on my blog of people from all over the world seeking out information on fibular hemimelia and complex syndactyly. Today I’m focusing on her hands. Surgery was completed in January 2010 on her right hand, so this is the hand of most concern. Both hands are considered complex syndactyly, however two of her three existing fingers on her right hand were webbed. I’m not sure if this is the politically correct way, but her fingers were permanently fused together with nails fused making it a case which is classified as complex.

Waiting for the first surgery. She's so little!

In the first procedure, our hand surgeon released the fused fingers using a skin graft off her hip. To the outside observer, it seems the surgeon should be able to simply cut the fingers apart. Sorry, I know that’s graphic, however it seems somewhat straightforward. Not so. An intricate set of incisions in a zigzag pattern separated her tiny fingers. The graft assisted in creating enough skin to make the digits independent of one another. What took place later was six weeks in a cast and another several weeks in a splint. Both allowed the skin grafts to heal completely. What was left was dense skin on the insides of her fingers which were incredibly sensitive to touch. Coupled with her sensory issues, it made any kind of physical therapy difficult.

Newly separated fingers

Over the past two years, we have continued visiting our hand surgeon and other medical specialists in order to make sure the scar tissue and skin allowed for growth and mobility of her pinkie. With growth and scar tissue, her pinkie is in a permanently bent position. Over time, this causes damage to the joint. Complicating factors is an additional bone in the tip of her pinkie crooking her finger in toward the other. This is part of her hand anomaly and under normal circumstances; a person doesn’t have this second bone in the tip of their finger. If you look at her nail on this particular finger, it’s physically wider on the nail. 

We have known for a while this will need to be correctly, however we continued to wait as long as possible. Her emotional growth over the past three years is nothing short of miraculous. Really the special needs have been secondary. We forget. There are times I look at a five fingered child, and my natural response is the child’s hand is grotesquely wide. No, it’s actually a healthy hand. It’s just this is my normal. I don’t see it. I don’t say I forget to sound like a parent that’s so above needing to even react to her special need. I say it in all honesty. She is thriving, and it’s not on my radar as I watch her coming home saying, “Learning is fun mommy!”

However, we know we can’t allow the joint to contract long enough that we cause permanent damage. Honestly, I’ve had so much anxiety as we’ve made this decision. There’s a constant balancing act between what’s physically necessary and cosmetically unnecessary. She hates having a cast. It’s heavy and uncomfortable, and can I be frank? (Yes Tom, you can be Tom if I can be Frank). She’s full of piss and vinegar the entire time she has a cast on. She hates it, and who could blame her? I’m overjoyed the surgeon said only three weeks with the cast on. I’m holding her to that timeline. We need it off as soon as possible for everyone involved!
Waiting for our appointment last fall.
So as hard as it is to think of another surgery, I know there is someone greater than myself orchestrating this entire event. This is another blog post. Our surgeon has jury duty, so we set it for April 16th with an alternate date of May 7th. She loves the cabin we go to in northern WI, and she loves to swim. Both activities we do over summer. It’s an end goal.  More than any trepidation, I’m thrilled this will be completely healed before she goes back to school in the fall for kindergarten. I thought we might be into next fall before this took place. Now I know she will be ready when it’s time.

Okay, I’m off to my busy Saturday!

Tuesday, March 12, 2013


I’ve started a new blog post at least three times before today, and none of them are posted. It was an eventful week! Wednesday was wrought with uncertainty as Sidney was convinced she would never know what to do in Kindergarten roundup. As her teacher Mrs. A. says, “She’s all about business.” She loves knowing what to do next and thrives in a very structured routine. I knew as soon as she saw her friends inside the kindergarten classroom, everything was going to be okay, but I was unsure if some of her sensory stuff and issues with body basics might pop up under the stress of the new environment.
Watching brothers band concert. Sorry I can't post the photos of Eli playing, because they have kids playing I don't know. 
She went through the morning with no problems. This was a huge relief. In addition to all the other uncertainties, I was concerned about her schedule leading up to the event. Multiple snow days have thrown her into a tizzy. As long as each day is like the last, Sidney is great. If something is alterned, it’s like she’s wired with a panic alarm. Her behavior shifts from calm to a difficult demeanor with more scratching and temper tantrums like I saw after roundup or night terrors which had seen during the week. But the good news is she was able to get through the day without upset during the process which is a huge hurdle.
Our snowy backyard looking toward the neighbors.
The next day the kindergarten teacher approached me saying she was going to send the papers home with her in preschool the following day. I was in shocked disbelief. Did this mean she wasn’t going? I was reassured it meant nothing of the sort. She had zero issues, and there was no reason to meet with us before the fall when we typically talk with the teacher. This is usually to inform the teacher Sidney’s only special need is her need to be special. 
Thanks for plowing us out Dustin!
Tom will be in one for a week in Colorado this summer. 

Saturday, March 2, 2013

Vegas Vacation (Kids Version)

Do you ever have one of those days when you catch yourself sitting on the bathroom floor talking to the cat? It was a really great day, but as my mom told me after staying with the kids, he’s somehow soothing. And I’d like to tell you the remainder of the day provided more clarity, however I’m looking across the room at Tom wearing a tiara with the words “Happy Birthday” across the top. Tom and I are not good about celebrating our own birthdays. I realized it’s really important to our kids to celebrate it. Even if it means spending $10 for a cake mix, frosting, and grilling outside during the winter.  

So on to the real reason I’m posting. Here are more photos from last weekend. Eli and Sidney spent time with Grandma JeanJean and Grandpa BobBob in a combination of time at their house and ours. Grandma JeanJean choreographed the routine of dropping off and picking up for school and Boy Scouts. We are VERY appreciative for the time away which leads to my next statement.
Read my previous post on marriage and the importance of couples getting away in relationship to the comment I made. This is for you Mom, my ever faithful blog reader. My previous blog post advised, “We spend 18 years raising our kids out of what we hope is 40 or 50 years married.” My mother corrected me today by reminding me they have been married 44 years and don’t plan on going anywhere soon. Hilarious. What an example to my own marriage.

Hanging out in the snow. 

Sidney at my mom and dad's house having fun with the dollhouse my dad made me as a kid. Sidney looks so grown up in this picture!