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A Modified Stroller and a Communication Refresher

Submitted by kim on Tue, 07/22/2014 - 18:40 in Lessons for Mom, Nathaniel's Story

I completely botched a conversation with one of Nathaniel's therapists the other day. She arrived for our therapy session and saw his medical stroller sitting in the living room. She made a comment something like, "Does he use that stroller? All he really needs is a standard stroller." I heard: "Why are you putting him in that - go buy a regular stroller!"

Nathaniel's medical stroller is a tool that helps me as a caregiver, not him. I realized long ago that he doesn't need all the support that the stroller provides. We have not adjusted the stroller since the day it was delivered by a company representative. This thing has a lot of bolts! But I have continued to use it for morning walks which are currently a daily highlight for both of us. The cargo area below is big enough to hold his suction machine. The weight of the stroller offsets the weight of his airway bag. His feeding pump and bag operate easiest when hung on the IV pole rather than housed in the portable backpack I would have to use with a standard stroller. As Nathaniel's mobility increases, the stroller has become even more valuable. It is the best place for Nathaniel during a g-tube feeding. The tray that allows for some fine motor activities, and it can be used as a high chair at family meals. He probably sits in the stroller less than two hours a day total and always with some activity taking advantage of his limited mobility. But for those two hours, the medical stroller is a tremendous help. AND most importantly, it is a quality $2,000 stroller that is already paid for and aready in my house.

I responded to the therapist poorly. I could have said, "I find the stroller useful in many ways, can you explain what you do not feel is best for him." She could have shared her initial concerns in a more professional manner. I might have heard something different if she had said, "Can we go for a walk next week during therapy? I would like to show you how to adjust Nathaniel's stroller to meet his current physical abilities." That is what I needed - her help in making the stroller the best tool possible for Nathaniel's current physical abilities. Communication is hard sometimes. I am constantly relearning the strategy that in any conversation both people have the freedom and responsibility to speak differently and change the direction to a more productive exchange. Sigh. More mercy needed.

I can not do over the bad therapy day, but I can move forward in Nathaniel's care. Big brother Ben to the rescue. We spent two hours today reading the stroller manual and thinking, "How do we make this look more like a standard stroller?" One bolt at a time we made adjustments. It was amazing how much stuff we took off! (Exclamation point because I am assuming that means lighter on tomorrow morning's walk!) It is exciting to see Nathaniel's growth and development in such tangible ways. Ben was also able to adjust the tray height so it no longer hits right at Nathaniel's g-button. I suspect a physical therapist and the company rep would have been faster at making the adjustments, but it was productive tool time with my boys and Nathaniel was pretty tickled with his new mobility within the stroller.

Nathaniel thanks Ben with a big kiss.

Can you help? We left the center knee block in place. Nathaniel does not need it for leg support, but without it, he was capable of wiggling down and sliding out of the seatbelt and stroller. Anyone familiar with using a Kid Kart Express and know of a different way to get a  strap between the legs?