Thursday, October 3, 2013


The term "positioning" is a new one for me. It's new, but  important. Positioning is the way a person supports their body. This is important for a whole slew of health reasons, probably more than I'm even aware of.

In our situation, positioning is vital for Martha's entire digestive tract and aspiration. As she grows longer and heavier but continues to be delayed in her milestones, positioning becomes necessary to prevent scoliosis and the specific way Martha moves her body. She is followed closely by a doctor who specializes in movement, and who is constantly aware of the unique ways in which she moves her body.

So, in June, we were very happy that our PM&R doctor (Physical Medicine and Rehabilitation), referred us for a seating evaluation for an adaptive chair that would position Martha correctly with her spine and head aligned, and her arms and pelvis supported. How wonderful!

The process quickly turned into a disaster. I wasn't getting any communication from Medical Supply, we waited weeks and weeks to see a demonstration chair (which is required for insurance reasons), and my phone calls went unanswered. Finally, after nearly 10 weeks of waiting, we had a short demonstration in our home with an adaptive chair.

After our demonstration in August, I waited four weeks with hope that insurance pre-authorizations were being run, and that letters of medical necessity were being written.

Finding it odd once again that I hadn't been contacted, I called Medical Supply. I was rerouted to a different "Rep" for the company. I was then told on the phone that the Rep we worked with was no longer with the company and that we needed to start the process over somewhere else.

No progress had been made on my daughter's chair. For three months.

What a waste.

I put a lot of emotion into this adaptive chair, because I knew how much it would impact my daughter's quality of life. Don't they know that? Don't they know that I bring our stroller into the dining room every night so our daughter can sit with our family during dinner? Don't they know that she's 10 months old and the only place I have to set her down is a bouncer seat that my other children outgrew by three months old?

Medical Supply emailed me back all the referral information that I had given them, as well as the line "We're sorry, and thank you for your understanding." I sent a scathing email back thanking them for the apology, but told them in very blunt terms that they absolutely did not have my understanding.

I wasn't unreasonable, however. Because that's where things kinda suck. I can't threaten, and there are no consequences for the person on the other side who let Martha slip through the cracks. I'm at their mercy. If they don't do their job, I can tell them how terribly disappointed I am, but it doesn't change a thing for our predicament.

Yesterday, a week after our fallout, Martha had another seating evaluation in a different location, different vendor and different products. What a difference! I have my fingers crossed that within three months Martha will be sitting in her new chair!
 This is the style of style and brand of Martha's new chair, although this picture is not exactly what hers will look like. Martha's will have a strap across her chest, supports at her pelvis and neck, and be smaller all around.

The very cool thing about this stroller is that the seat detaches and can fit on top of a frame that shifts height. She'll be able to slide up to the table, or as high as a breakfast bar! There is an attachable tray, and a canopy. What a new world for her!

In addition to her positioning system, Martha is also getting this adaptive carseat. I saw this carseat in person, and wow, it's huge. The material is soft and fuzzy, and the model I saw was brown, so it looked just a teddy bear. This system will fit her to 100lbs. We have a pretty big vehicle, but I've never seen anything like this before. Once we have it I'll have to show more pictures so you can actually see how intense this system is.

There are more posts I want to write about this specific situation, because it helped me learn a lot about this process. You, dear reader, will likely never attempt to acquire a pediatric adaptive positioning chair, and it was a first for me. Despite me being a squeaky wheel, it wasn't enough in this case. I will know better next time.

Here's to getting our little one sitting!

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