Fans

The casts are heavy and hot. No matter what time of year your child gets casted, they will run hotter than normal and that can make sleeping very challenging, especially since they will have to find a new way to position themselves while sleeping. Having one or two fans that can be aimed directly at your child’s bed can help tremendously in their comfort. Also, the cooler your child’s body temperature, the less likely they will become itchy at night. Invest in a few small fans or box fans before surgery.

Cramps

Load up on children’s pain relievers and forms of distraction before the big day. Unfortunately, muscle cramps and atrophy are going to happen when legs are forced into a non-moving position for long periods of time. Just think of how stiff you feel after a long car ride. You’ll want to have Children’s Tyelonol in your child’s favorite form of delivery on you at all times. Sometimes the pain can get severe, or your child may have a large emotional response to the pain. When this happens we turn to distraction. We downloaded Angry Birds on my phone to whip out when we needed a distraction on the go. At home, we may turn on an episode of Bluey to help us work through an episode of pain. Do what works for your child.

Bed & Bedding

Peter had just transitioned from his kid’s bed into a twin mattress when he got his diagnosis. In his cast, we knew he would no longer fit comfortably in the twin. We went to IKEA and got a Full-sized cooling mattress. It was pricey and we didn’t want to spend such money on a new mattress, but I’m glad we did. It has remained cool to the touch throughout the experience. 

 

We put a fitted sheet on the bed and had a loose blanket he could use if he wanted (it was June so he never wanted it). We added 4 additional pillows to the bed and placed him in the center of them. That way, no matter how he turned, he had support for his legs. 

 

The first week after surgery, I slept in the same room as Peter on the newly obsolete twin so I could instantly be there if he woke up confused or upset. Surprisingly, Peter only had a hard time sleeping the first two nights. Once he was sleeping soundly through the night, I returned to sleeping in the other room. 

 

He sleeps on his side most nights but also on his back and belly. It’s incredible how quickly kids adapt to their situation.

Floor Mattress & Beanbag Chair

We also bought a fold out “floor mattress” and a beanbag chair off Amazon. A few moms had told me their kids lived on the pull out sofa while casted, but we didn’t have one of those. We moved our coffee table and put the floor mattress at the base of our sectional sofa in front of the TV. This way Peter was able to roll around and have space to lounge that was soft. The mattress would fold and allow him to comfortably recline slightly and watch TV. 

 

We were able to carry Peter up and down the stairs. If we had been unable, he’d have slept on that mattress at night.

 

We also got a beanbag chair. He would take naps in it and hang out in it when he was dozing. It did a great job supporting his legs. I made the mistake of buying one that was too large and cumbersome. I would recommend getting one that’s the right size for your child and one that could easily be moved to another room if possible. Almost a year in, and we don’t frankly use either the floor mattress or beanbag anymore, but while casted and the first few months of the brace, we used them for hours every day.

Clothing

I hope you know how to sew, or have friends that do, because clothing your child is a huge pain with the cast. (The brace is easy–pop off the brace and get dressed, then pop it back on.) With the cast, you need underwear and pants that can be put on without going over their legs. I did some Google searching and found a great website that sent Peter several pairs of pants and shorts. These were so nice and well made. His favorite pants by far. Visit pantsforapurpose.org and Garrett will get you set up. However, you will want more pants than they will send just for ease of laundry. And you’ll need underwear as well. 

 

How I made pants and undies was pretty easy. I started off sewing, but got tired of this very quickly as sewing correctly with my machine takes loads of time and energy. Since these items would only be used for several weeks or months I went the easier route, and it worked great.

 

This is what I did.

 

1- Buy underwear and pants that are 2 sizes too big. The sizing you need may be bigger or smaller depending on your child and how you “sew.” So start with a cheap pair of pants, finish the process, have your kid try them on (with their legs splayed as if they were already in the cast) and THEN do the rest. (Keep your receipts from Target or Walmart so you can adjust as you go.)

 

2. Cut the outside sides of the pants from the hip to the waist with a pair of pinking shears. Pinking shears prevent the cut from unraveling. (It will unravel over time, but these pants are for only a few weeks and they’ll last long enough.) DO NOT cut the inside seam or crotch seam. 

 

3. Add snaps to the front and back of this new seam. You will need a snap press, but there’s a knack to it. If you’re handy with a sewing machine you can use velcro as well. We did some velcroed pants but I found that they didn’t hold up as well as the snappable clothing did.

 

Wash these new items on the delicate cycle as the seams are not sewed shut and thus fragile.

Toileting & Bathing

Peter was tall enough to pee standing in his cast which was a huge relief. But #2s were more of a challenge. We positioned him onto the toilet and stressed how important it was he keep the cast dry, and thus focus on where his penis was pointed. While some parents were able to use two stools (spaced for where the child’s feet would be) for hand washing in the sink, Peter was too small for this. So we lifted him up to the sink to wash his hands. At night, we used “nighttime undies” AKA pull ups with side seams for ease. (He would wet the bed once or week or so at this time, and we weren’t dealing with this situation during this time of life.)

 

When we would take Peter out and about, we would bring urinals with us, as many toilets would be too high for us to use easily. Ask every nurse you see on surgery day for one and collect as many as you can. 

 

Peter was still a kid who wanted to play and get dirty, as kids do. So he would need sponge baths and hair washings. We would put a towel on the counter, strip off his clothes and wash his hair in the sink. We would sponge his torso with wet soapy washcloths while we were at it, being exceedingly careful in keeping the cast dry.

Vehicle & Handicap Sign

We were originally concerned that Peter would not fit into my husband’s Ford Focus. Your child will be wide with their legs in that position and for some, even door frames may be problematic. My inlaws traded cars with us and we were able to easily fit Peter into the larger vehicle without issue. However, after a few weeks, it was clear the larger vehicle was actually unnecessary, and we switched back from the Suburban to the Focus. Be sure to have a carseat (if necessary) and vehicle game plan before surgery day.

 

I cannot stress enough how vital it is you get a Handicap hanger for your car. Don’t fight it. Just do it. Taking your child anywhere now is going to be challenging and you will be grateful for the extra space this blue tag will give you.

 

As you can see, there isn’t a ton of room for Peter in our Toyota Camry, but it worked. Originally we added a prop for his legs to rest on in the car. (It was a plastic sled.) We ended up moving away from that as he got more comfortable with the brace and it didn’t bother him to have them “floating” in the car seat.

Pediatric Wheelchair

Wheelchairs are cumbersome. Pediatric wheelchairs are cumbersome as well, but much less so. Insurance is going to want to give you a regular wheelchair, designed for adults. FIGHT THEM on this and insist on a pediatric wheelchair. It took me only one or two phone calls to get a pediatric wheelchair and it was well worth it. Peter can independently move in his wheelchair since it is pediatric sized. He would be unable to do so in an adult chair. 

 

Get the chair as early as you can and act excited with its arrival. Have your child practice using it before surgery day if at all possible. You too need to become familiar with it before show time. Learn how to fold it up. Figure out the seatbelt and remove the leg extenders if you don’t want them.

 

If you do get the pediatric wheelchair, I would recommend also buying handlebar extenders. Though pricey, it makes things much easier for the adult pushing the chair. Note: These ones won’t fit quite right, and they will turn on the handles a bit, requiring frequent adjusting. But it was worth it to us. (And they’ve been going strong for over a year.) 

Social Interactions

People are going to stare at your child. It’s going to happen and there’s nothing you can do to stop it. And that’s on them, not you or your kid. But your kid will have a much easier time adjusting if they know this is coming. Some phrases we used when preparing to go out in our “contraption” as older individuals would call his cast or brace + wheelchair is “Wow, they’ve never seen anything like your cast/brace before! That’s why they’re looking.” “You’re a 1 in 12,000 kid and they want to know what this is all about. Pretty cool, right?” We always make it positive and 9/10 people will smile and not say anything. 

 

Sometimes people do say things and you respond as best as you can in the moment. Even if what they say is insulting, ignorant or pitiful in some way, we just smiled and ignored it. The last thing in the world you want to do is show your child that their words give you any negative emotions. Because their job isn’t to react to a stranger’s ideas or confusion, it’s to be a kid who enjoys the trip to wherever it is you’re going. 

 

Here are a few books we bought to help show Peter that different is ok. I’d recommend reading these and talking about what will be different in a mild, not-a-big deal way. Because, as we’ve explained to Peter, the vast majority of people have some sort of disease whether it’s physical or mental. What child doesn’t have a parent or grandparent on an antidepressant, blood pressure medication, etc?  Just Ask and Some Bodies were our favorite books that highlight the reality that we are all different.

 

Your child will have more limitations than before. So you’ll be RSVP-ing No to a lot of the birthday parties your kid’s invited to. And you’ll feel bad. Especially since they can’t make or maintain friends the way many peers do, through a sport or at fun outdoor events or playgrounds. We invested in a lot of boardgames and had playdates at our house and movie theaters instead, but no matter how you slice it, your kid’s social life is going to take a hit. Talk openly about it and do the best you can with the resources you have. Remember, you’re doing the best you can. Your kid is and will be resilient. This is all temporary.

Don’t stop living.

Regardless of where you are in your child’s treatment. Whether it’s wait and see with activity restrictions, bracing, casting or other. Do not put your life on hold. No matter how old your kid is, they’re looking to you to see if this is going to change your life as well as theirs. And Perthes lasts years. So make it work. Keep doing what your family loves. Go on trips. Go to sporting events. Live your lives. Show your kids what resiliency looks like. Make the most of the time you have now because, as we all know all too well, you don’t ever know what’s in store. 

 

It’s going to be hard. It’s going to suck. You’re all going to get through it.