Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, January 16, 2014

Wheelchair Fitting... check!

After 9 months with a gtube, Meagan has finally discovered it.  That may seem silly to say - but it's true.  Yes, she has glanced at it before. Yes, she has realized its presence when it has been feeding time - but she has never really cared. Or taken notice. Or tried to do anything with it. Think of the moment when you first see a child realize they have hands. Or fingers. Or feet. Or anything else...  That look of wonder and amazement ... "...these things are actually ON me??"  This happened last night with Meagan and her button.

I was changing her for bed and left her shirt off while I changed her diaper.  As I sat her up next to me, she looked down and patted her stomach.  I said, "belly!"  The next thing I knew, her eyes lit up and she reached over to her button and started to pat it as well. I told her "button!"  She looked at me .. and then looked back at her button and kept patting it.  It must have been so fun to her, she then began to twist it... and then she began to pull at it. And pull at it. I was happy with her new discovery, but at the same time really did not want to learn on the fly how to replace a g-button (we have an appointment in a few weeks with Dr. B to do this for the first time)... nor did we need an unnecessary trip to the ER during flu season, so I gently reached down and moved her hand and said (and signed) "No."  Meagan looked at me and said "No!" ..and then continued to pull at her button. I said and signed "No! Stop it."  Meagan again looked at me and said "No. Stop it." 

Uh oh.......

In other news of the day, Meagan was fitted for her wheelchair today. Yay! She will be getting a Zippie Voyager - it will provide the support she needs, but also be adaptable to our active family lifestyle. 

Photo of what Meagan's stroller style wheelchair will look like... 

 It can go inside or outside and is approved for bus transportation... so when she starts school in the Fall, she can go right onto the bus in this chair.  It has a large tray we can put on for times when we are places where she may need to patiently (or not) wait for her sisters so we can put toys on it, or ipad games, or whatever is needed to help entertain her. 

 It has an easy fold down and the PT said this should be able to fit right into the back space in our minivan. It will have a place to safely and securely hang her feeding bag when she is on a feed, but most importantly, it will provide the positioning support Meagan needs.  I know many see her doing "well" and starting to sit..etc. This is all wonderful, for sure - but - she still needs a lot of support and has lots of times where she really needs more than her stroller can provide.  Meagan sits now by pulling mostly with her upper trunk and front of her belly.  What this means is she is now getting a curve in her lower back - we have noticed this a little bit a few weeks ago but the PT said today it was much more prominent.  Meagan is also starting to not hold her hips underneath her - rather letting them curve forward and let her lower back push outward, exacerbating the curve.  Though Meagan can fit in her stroller still, this chair will be a huge blessing for her lower back and overall development and safety.  The PT said it will have the lower lumbar support she will need to hopefully help correct this curve before it becomes a serious issue because as it is now, she generally sinks into the back of her stroller, which is making her lower back worse.  

Quick video showing some of the features.....

 ...and one of the fold down

It will take about 3 months until Meagan gets her chair - and the insurance process could be a nightmare so pray that it is approved and all goes smoothly! We are excited for April when Meagan will finally be in a device that is both comfortable for her, but functional as well in so many ways her stroller is starting not to be.  We are excited for this new step in Meagan's journey and can't wait to see her in her new wheels! Plus, it will have a pink canopy - what girl wouldn't love that?!


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