Tuesday, June 28, 2011

The list

This week we are doing a trial with a Quickie Kid Kart push chair. It is a special needs stroller that provides a lot more support than a typical stroller. More importantly, it has bus tie-down ability for the Fall when Roa rides to school. Last week we tried the Ottobock, and were not happy with it's overkill support and large size. This Quickie is average size, as special needs strollers go and has head support and trunk laterals that work well for Roa. We struggle with the idea of purchasing on of these push chairs for many reasons. one, it is hard to enter this world of "wheelchair" contraptions when you wish so desparately hard that Roa will walk. Two, it is not exactly a "therapy chair", as the description implies. There is no work when strapped and belted and fully supported. Three, we don't want smart little Rojo to figure out that this is easy....just push me around. And lastly, silly as this sounds, the new push chair idea will be the complete and utter Cerebral Palsy red flag. As I used it yesterday, going into Functional Kids for therapy, I was very conscience of the looks we got from others. We no longer can disguise the lack of motor control with a regular stroller. This chair screams...yep. I have CP.
Silly. I know. The kid walks with a gait trainer, wears AFOs...it's one more thing. But just another step in the grief cycle. And one more thing to add to the costly list while traveling through CPland.

3 comments:

  1. I worte a whole post and then lost it :o( Anyway, at our transition meeting for school district services (Sam turns 3 9/24), we were told we'd have to get a WC or adaptive stroller, and I went to my car afterward and sobbed. I felt like they were throwing this arbitrary deadline at me, like if she's not walking by 3, she won't. Like they were giving up. And, I'm NOT giving up. Like you, I desperately want her to walk. Desperately. And, in my heart of hearts, I believe she will, but having THAT thrown my way was rough, even if I *know* in the back of my mind that the school will need it for transporting, etc. IT sucks. Plain and simple.

    I'd love to see a picture of Roa in the strollers as you rate them!

    I had no idea some were "therapy strollers" -- hadn't heard that term before, and like you, I don't think putting a kiddo in a contraption that allows them and their muscles to just be passive is the best thing for kiddos with movement issues.

    MY journey with my girl is pure magic, but it sure has its moments of pure stinkage!

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  2. We got the Snugseat XPanda for our guy who just turned 3. It has some quarks but we like it. We were able to get the high-low base for in the house as well as the stroller base. Which is nice. It really does give him a lot of support which is good for working on fine motor skills and self feeding.

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  3. HI
    My name is Jenna and I came across your site. Roa is an amazing, courageous, strong, and determined fighter. He is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and I love it when people sign my guestbook. www.miraclechamp.webs.com

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