Getting some wheels at the Equipment Clinic

Somehow the visit to Equipment Clinic snuck up on me.  It was a 3-month wait after being referred by the Down Syndrome Clinic, and then I found myself trucking downtown with Evie and her entourage for the appointment.  The nanny and I imagined that the Boston Children's Hospital Equipment Clinic would be a huge room filed with all types of equipment for kids with disabilities, and that Evie would try different equipment.

We were sort of close--a long line of wheelchairs along the hallway led up to a smaller exam room. The physical therapist (PT) and a representative from National Seating and Mobility were with us.  The PT reviewed Evie's needs, which were a pediatric walker and possibly adaptive stroller. 

Rewind for a second. Evie is doing great with her ankle-foot orthotics, but she is still wanting to lean forward while she stands.  Her Early Intervention team thought that as she transitions to preschool in a few months (!),  it is a good time to ask for a gait trainer/walker, so that when she needs to go down the hallway at school, she can transport herself like a big girl.   The main take-home point I learned from our PT is that we would want Evie to have the equipment she needs to participate fully in whatever everyone else is doing, and not be viewed by the other kids as a baby.  If Evie was in a stroller to go to recess, they might view her as a baby, but if she was in an adaptive chair, it would be easier to explain that she wasn't able to walk as long as everyone else because her muscles got tired faster.  This speaks to my mama heart, wanting my baby girl to fit in and make friends when she goes to school.  

Ok, so back to Equipment Clinic.  The PT had a gait trainer and a pediatric walker.  I immediately thought that they were cute.  I can get behind a pink gait trainer any day.  It looks like it means business, but still fashionable.  Evie didn't try a gait trainer, because when she got in the walker, it was clear to the PT that Evie needed equipment that encourages her to do the work of standing up, and not relying on a gait trainer that would hold up her trunk and allow her to do the "wet noodle," which she is apt to do sometimes.  So we put her into the shiny gold walker, which essentially is used in the opposite direction as one would imagine an 80 year old would have.  This way, Evie has a seat to sit back on if she needs to rest, but nothing in front of her to lean on, and handlebars on the side to pull her walker behind her.  

Gait Trainer (Anterior)

Evie wanted nothing to do with it.  She wanted out right away.  I had to bring out the iPad just to get her to sit still.  The marketing department came by to try to get some pictures, and they turned right back around when they saw her red, swollen face from screaming.  If anyone wants marketing pics of a wailing child in your hospital brochure, we are available. 

Before we made Evie actually do some work and she started crying.

We made the executive decision that we would go with a purple pediatric walker with the seat and handlebars.  No hand straps needed for Evie--she would go ballistic. That fact in itself reflects how she could walk if she wanted to. We just need to convince her that she can do it. 

2nd mission: To discuss an adaptive stroller vs wheelchair.  I didn't walk in thinking that we would get her a wheelchair.  I always imagined that she would just learn to walk eventually, and might use a walker.  But because it takes 90 days to get equipment delivered to your house, and in 90 days she will be very close to her first day of preschool, we want to be ready.  Ready for Evie to participate in everything in which her classmates will participate.

I took one look at the adaptive stroller and thought it looked like our City Mini stroller, and said so to the PT.

Adaptive Stroller--too close to a regular stroller!

She tried to be impartial, but I could tell she agreed that it was very similar to our stroller, with the difference that it can be tilted back in a recumbent position.  The pediatric wheelchair looked inviting.  Evie thought so too, because when I put her inside the wheelchair, she crossed her legs and continued watching her iPad.  Her BFF Naomi thought this was amazing, and toddled around to the back and started pushing Evie down the hallway.  I could tell that this was the start of amazing walks to the park, with Evie possibly learning to turn the wheels herself and feel more independent. 

Evie got her wheelchair tricked out to the 9's.  She has sparkly mauve pink with a silver crossbar, a headrest, arm handles, a see-through tray for eating and also for taping a communication menu underneath so that she can always point to what she wants if she doesn't have all her verbal skills yet, and fold-down handlebars for us.  As they handed me a brochure with all the color choices, I felt like I was picking a color for a new car.  It IS kind of like a car--you're stuck with the color you pick for at least several years, and you pick out the extras that you want.  And once we get it in 3 months, maybe I will find a way to sneak penguin stickers onto it somewhere. 

Having said this, as I watch a lot of her 2-3 year old peers in the Down Syndrome community start to walk, my greatest hope is that when the walker and the wheelchair arrive, she won't need them long or she won't need them at all.  But all in Evie's own time. 

Overall, this visit took almost 90 minutes, and they gave her ample time to try out the equipment (even if she didn't want to).  The equipment company rep took measurements of her legs, hips, girth, and other chair-relevant parameters.

I am blogging about this because I want other parents of kids with DS to be aware of the Equipment Clinic.  A kid shouldn't have to turn 3, go to preschool, and THEN hear about the possibility of equipment that could help them to participate, and waste 3 months waiting for an appointment and another 3 months for the equipment delivery.  We will receive ours just in time, so that Evie can go right into regular classroom activities.  

So here's to the Equipment Clinic, and here's to Evie walking, either with equipment or without it!