Equipment

by Todd

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.

Katy just 20 minutes after birth

You can see from the way Katy's legs are positioned here that our little girl had some pretty serious issues with her hips from birth.

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.

Katy's first brace

Katy was in her first Pavlik Harness just five days after she was born.

From then on, Katy has had some sort of medical or special needs equipment in use nearly every day of her life.

Katy in her stander

Our first major piece of equipment: Katy's stander.

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.

Katy in standing braces

Katy using braces on her legs to help her stand.

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.

Hope4katy.com AFOs

Katy's first AFOs.

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 bikeĀ  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.

hope4katy.com wheelchair

Katy's first wheelchair. Hot pink and black, just what all the cool kids were wearing then.

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:

hope4katy.com special needs swing

Before we got this swing, getting into and out of her various models of toddler swings required at least two people because of her braces and her inability to help with any of the process.

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.

{ 6 comments… read them below or add one }

elizabeth m July 21, 2010 at 12:13 pm

Hi Todd! Thanks for taking time to talk about equipment! Actually, I was just thinking the other day how difficult it is putting Evan in a Toddler swing (he’s just so heavy and hypotonic that maneuvering him is hard) and I was trying to figure out what on earth I’m going to do NOW! lol I didn’t even THINK about the special needs swing! DUH! So thanks for the idea!

Also, did you guys ever try to use strollers for her in the beginning? Evan is mobile, but he’s not great at it and pretty slow too, so in busy areas or longer distances, letting him walk isn’t an option.. We currently use a stroller, and I am wondering what I’ll do if anyone ever says ‘no strollers allowed’ (like in restaurants) when we NEED one for him–and if they would believe me. Should I just opt for a wheelchair to have on hand to avoid such confrontations?

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Todd August 23, 2010 at 9:38 am

Elizabeth- Can’t believe I didn’t reply to this before! The special needs swing is the ONLY way we can swing with Katy now. It’s just far too difficult to do any other way.

As far as strollers/wheelchair situation, we have never been told we couldn’t use a stroller after explaining Katy’s situation. Not that it couldn’t happen, but in general, people are really good about it once they understand the situation. We actually used strollers for the most part because of the transportation issue. We just plain needed the room in the car. Whenever we can afford to get a van, I’m sure we’ll be using her wheelchair more and more, though. She likes to be in control of where she’s going and I think she feels more involved in her wheelchair.

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Nicole November 1, 2010 at 9:38 pm

My daughter is 3 and has Cerebral Palsy. We also have issues with getting her into and out of the baby/toddler swings. I am looking into getting a special needs swing soon.

We also use a stroller for Keagan to get around busy places or for long distances. We just received an adpative stroller for her and it’s great. It looks like an umbrella stroller but is bigger. She has so much room now and it is easier to get her into. We use it as her wheelchair, and we haven’t had any problems when places say no strollers allowed. If you explain to them it’s like a wheelchair, they usually understand.

Todd, have you guys looked into a Lite Gait Trainer for Katy? It looks like a big walker and has a harness connected to it. You put it over a treadmill and the harness can be adjusted to take as much weight off of her as needed. Then you move her feet in a walking manner on a very slow speed. We just got on for our daughter and it helps her tremendously. Just wanted to pass on the info. http://www.litegait.com

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Todd January 18, 2011 at 10:23 pm

Nicole- Actually we have looked at a Lite Gait Trainer. We’ve passed on it in the past because of the cost; but we’re always looking for other possibilities for Katy. Did you guys get the treadmill as well or just the harness?

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Angela Redden November 18, 2010 at 5:20 pm

My six year old son has autism and is non-verbal. He started with a Springboard Lite but then moved onto an Ipad which he ADORES!! It’s been one of the best things for him, along with vision therapy.

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Todd January 18, 2011 at 10:32 pm

Angela-
We’ve been amazed – and her speech therapists have been amazed – at how much Katy’s language and speech has improved since she started to use Proloquo2go on the iPad. Her pronunciation is much better. And surprisingly enough, her speech program has become her favorite “game” to play. She hardly ever watches videos anymore or plays any other games. It’s really been amazing.

todd

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