Motley Crew

We appeared to be a motley crew at first; two middle aged moms, a young girl, a teenage boy, and an older gentleman. And yet we’d all had our lives changed by some of the same people.

Aidan and I were in the waiting room at the orthotist’s office anticipating new foot braces and a lift to eliminate his leg length discrepency. In walked a young girl with a tiny walker and pretty pink glasses. She and Aidan sized each other up. Aidan was certainly familiar with her walker, having one of his own yet much taller. He gave her a big smile. The girl’s mom jumped right in with introductions. She spoke directly to Aidan, asking how old he was. She encouraged her daughter to tell him her name.

I’ve received several encouraging emails recently relaying to me that people feel more comfortable interacting with people with disabilities after having read my blog and knowing that “hello” is usually the best place to start. This is why I write. With the flow of conversation in that waiting room, I understood the seeming awkwardness is easy for us because we’re in it, surrounded by the need to direct and facilitate conversations all the time. It was nice to have it feel so natural.

This sweet girl received her new glass slipper, just like a princess. No strange, medical apparatus in her mind. Just a very special shoe that makes her a very special girl. I so want her to remember that different can be wonderful and every special girl can be a princess if they want to.

The mom and I started talking about our medical teams. She prefaced by saying she has the best team ever and when she named exactly the same people on our team, I knew she was right.

Yes, this one taught Aidan how to walk; one foot in front of the other for months training his brain that this is how you do it. She changed our lives.

Yes, this one gave Aidan independent mobility by promoting his powerchair driving. She changed our lives.

And yes, this one we trusted with difficult surgical decisions, and he gave my son a new body. He changed our lives.

Into the room walked an older gentleman with one leg and a walker, just like the princess’ and Aidan’s.  Aidan stared. The little girl asked her mom why he has one leg. She didn’t skip a beat. “I don’t know. Would you like to ask him?”

The gentleman sat down and told us his story. He was at the orthotist today to receive his new prosthetic leg. I’m not sure Aidan and the princess knew what to make of it all but they certainly appeared willing to receive this important information.

The UPS man walked into this small office and patiently maveuvered his way through all of our wonky selves, marking this exceptional moment as typical in our world. We all went our separate ways.

Aidan and I headed into our appointment. What has always been somewhat routine now felt so important. Our orthotist has used the perfect balance of science and art for years to help Aidan become who he is. Aidan is a walker. He needs these braces to walk. My boy walks. He drives too. It’s all quite amazing.

As we finally left the office, I glanced at the closed door, the one I knew had the parallel bars in it. I noticed the other orthotist enter with a prosthetic leg. I’m sure there was a healthy amount of anxiety and excitement in that room. Quite possibly there was pain or discomfort as well. But I had goosebumps knowing what was happening. In the course of my very mundane day, a life was being changed.

A princess, a teenage boy and a man with one leg walk into an office…..as they have so many times before….and bit by bit, then all of a sudden, their lives are changed.

I am Titanium, for real.

 

 

Aidan is five weeks out from having his spinal fusion. Two titanium rods were placed from his T3 all the way to his pelvis. That’s a lot of metal. His scoliosis was significant. It effected his ability to sit up and to walk and would eventually have compensated his health because of the scrunching of his internal organs. His bottom rib was sitting ON his hip bone. You probably can’t even contort your body to do that on demand. So off to the OR we went. We had a very positive experience with the medical staff and Aidan healed exceptionally well. We busted out of the hospital in just six days, record time for us.

Aidan is on no pain medications and is walking quite a bit. He has to relearn how to use his muscles which will, of course, take time. This is essentially a new body for him. Are you ready for some pictures?

First, let me show you his scar. We took his bandage off after just 10 days and it had dissolvable stitches. Check it out:

 

Aidan didn’t love the process but he was very patient with his daddy who put his CNA skills to work.

 

 

 

Here he is having some chill time after that big event:

 

 

 

Now check out what this surgery did to him in the most practical sense. Here he is BEFORE surgery:

 

And here he is AFTER:

 

 

 

And feel free to take a little peek inside:

Amazing, right? Aidan certainly thinks so.

Specialized Beds

One of the challenges of shopping for medical equipment is that you can’t just walk into a store, see all of your options and try them out. It frequently comes down to what your therapists and DME providers recommend. That speaks to the importance of having a knowledgable and trustworthy team, as I do.

It’s important to keep in mind that it’s not about which bed is best, but rather which bed is most appropriate. Kids have different needs.

Aidan has a Sleep Safe Bed because it’s most appropriate for him.

There were three factors that were most important in choosing Aidan’s bed.

1. It needed solid safety rails all the way around. Because he doesn’t have great control of his body, there are spaces in a typical hospital bed that Aidan could (and did) fall through.

2. It needed to move up and down. When it’s low, Aidan can get into bed. Then we can raise it for changing and dressing him so we’re not breaking our backs.

3. Because we will move the height daily, it needed to be electric. None of this turning a crank business.

4. As a bonus, Aidan’s bed is full sized. I realize that seems like a bit of a luxury, and it sort of it. However, during Aidan’s surgery recovery process, we had to be so gentle when we moved him and it was all very awkward. We needed more space, and with another surgery in his future we will have it.  This bed will also keep him comfortable as an adult.

In our search we found some other beds that may be more appropriate for other kids. I’m including them here. I have no experience with them, but found the websites to be very informative.

Consider your possible need for seizure padding (Aidan has it), an IV pole, or a covered canopy.

  While The Courtney Bed would not be strong enough to contain Aidan, it seems more appropriate for a child who has better control of his/her body but would be in danger when s/he wanders off.

Beds by George is most similar to Aidan’s Sleep Safe Bed. It had a heftier price tag and the full size was not electric. It’s beautiful, though, isn’t it?

Kayserbetten Beds have doors that open to the side rather than a rail that folds down. While I’m not entirely sure of the benefit of that, I think it’s pretty cool. I didn’t get a quote, mostly because I had a strong emotional reaction to the look of it.

I had a great conversation with Jeremy Lucas at the Pine Tree Society. He and some volunteers build specialized beds. They work with you and your team to give you exactly what you need. Because this is a volunteer project, they’re able to keep the cost down. This would be my first recommendation to anyone gathering information. Unfortunately,  they only work with beds at a fixed height.

I hope this helps you in your research. While we LOVE Aidan’s Sleep Safe bed, it’s because it’s most appropriate for him. It may not be exactly what you need for your child.