Katy’s medical equipment use began almost from birth.
The night – okay early morning – she arrived in this world, one of the doctor’s first questions for us was: “Did you know your baby was breech?” Nope. No clue. Since she was going to be a C-section birth anyway, I didn’t think much of the question at the time. However, after Katy was delivered, even from my first few photos, I thought something was wrong with her legs. You can see from the photo below her left hip just falling over her body. It was obvious to the doctors that her hips were out of their sockets. They didn’t tell us this until a couple of days later. Her feet were the other thing. I called them her chicken wings, since she would hold her toes almost back to her shins. Her orthopedist predicted we may have trouble with her feet later on in life. They’ve been a constant struggle for us over the past two years.
On her fifth day in this world, one day after we brought her home for the first time, we had our first orthopedist appointment. (If we had known then how many more doctors we would need…) Katy received her first brace for her hips – her Pavlik Harness – that same day. She would go through three more variations of these in the next three months. Her right hip settled into its socket okay with this treatment. The left did not and required open-reduction surgery to repair when she was just four months old.
From then on, Katy has had some sort of medical or special needs equipment in use nearly every day of her life.
Katy began using a stander in April of 2007. We gave up using it just a couple of months later. Here’s why: the black strap you see across her chest, that’s a velcro strap keeping her in place. That strap was almost three inches wide with velcro going completely across her little torso. Well, Katy – at the age of 2 – figured out how to take it off. After we finally had to resort to duct taping our little girl into her stander, we decided we needed to try something different.
Unfortunately, these braces above weren’t the answer, either. Katy has never had the strength in her legs to keep her hips up. This problem remains probably our biggest hurdle in getting her to walk. These little standing braces left horrible indentations along the back of her thighs.
By this time – April of 2007, Katy already has her first pair of AFOs (ankle-foot-orthoses). They honestly looked more like little ski boots than anything else.
Six months later, Katy received her first wheelchair, courtesy of Variety, the Children’s Charity of St. Louis. We were completely dumbfounded when we heard the price tag on this piece of equipment – nearly $10,000. Before Katy came along, I did some pretty serious bike riding for a while and was considering getting into road races. I bought a fully loaded professional-quality road bike in 2003 that was worth close to $4000. My daughter’s wheelchair cost two and a half times that much. Thankfully, Variety helped us pick up the tab after my insurance maxed out at $2000.
The photo above also shows Katy’s first AFOs from Shriners’ Hospital for Children in St. Louis. Thankfully, Shriners’ picks up the tabs for these. My DME (Durable Medical Equipment in insurance speak) budget was completely maxed out from the wheelchair at this time. You would be shocked to know just how expensive two custom molded pieces of plastic can be.
By this time, Katy was also using a gait trainer to try to help develop her leg muscles. She has since moved on to a larger one similar to the one you can see in the video below:
For us, equipment isn’t limited to things that Katy needs to walk or communicate with, it also means items we need just to help Katy enjoy being a kid. You wouldn’t think about it, but Katy can’t use regular swings. She’s too heavy and to big to fit in toddler swings, and she lacks the motor control necessary to use big kid swings. What’s the answer? A swing like you see below:
Today, Katy’s equipment list is as follows: 1 wheelchair, 1 gait trainer, 1 set of AFOs, 3 different versions of Augmentative Communication Devices (although we are going to try using an iPad for this shortly), 1 special needs-equipped stroller for places her wheelchair just won’t work and 1 special needs swing. Estimated value of current equipment: around $17,000.
And quite honestly, we’ve been lucky compared to some of our friends.