most of you know by now that piper got some new wheels a few weeks ago and girlfriend is pumped! we’re all very excited for her and while we were extremely…nervous?… at what this all entailed, now that it’s here, we’re very excited.
over the last few years, we’ve been very open about piper’s journey with cerebral palsy {you can read about that update HERE and HERE} and ehlers-danlos syndrome {you can read about this update HERE!} in hopes of destigmatizing labels and offering support for other families who may find themselves in similar circumstances. B

life as a parent of a child with special needs comes with it’s own set of challenges and victories and this new journey with a wheelchair is no different. when piper’s team of docs brought up the use of a wheelchair at her cerebral palsy clinic appointment in march, i vividly remember my response being, ‘oh no, we’re talking about a kid who goes to nature preschool, hikes and rides a bike.’

after talking to zach we decided a wheelchair may open doors for piper that we hadn’t necessarily thought about. we’ve always approached her differing abilities as life-long challenges that she was going to have to deal with so we needed to figure out how to deal with it…but that didn’t mean that we couldn’t do everything in our power to help her be the best she can be. and maybe that means a wheel chair.

she was fitted for a wheelchair specifically for her teeny body…ha, i’ve never seen one so small!…and she chose the colors black, blue and silver so it could be her ‘bat mobile’ . . . if y’all have any ideas to make it into the coolest bat mobile ever….let me know! 😉

piper will be a ‘part time wheelchair user’ meaning she is ambulatory and really, for the most part, will not be utilizing her chair in daily life. the goal of the chair is energy conservation and will specifically be used for big, long trips, or, if she has a particularly long day and then is tired the next day or is having leg pain. we’re trying to let piper lead the way in navigating that road so some of it will be trial and error!

piper had her next appointment at cp {cerebral palsy} clinic two weeks ago at dayton children’s hospital where we meet with her whole team to discuss any changes, updates etc.
i always leave with my brain hurting from consuming so much information… her whole team is wonderful and i truly feel so blessed that they’re caring for our sweet ducky. every single decision that is made is made as if it were their own child we were talking about and they’re so patient in answering every single one of my questions.

it’s a long 3 hour appointment, but the big take aways are:
– piper is getting a referral for gait lab which we are SO excited for. this will give us concrete data on the way she walks and help us to provide the best treatment plan for her!
pending results of gait lab…
– a hinged AFO {her previous batman brace}… ankle foot orthotic
-continued use of her knee brace on her left leg and a potential knee brace on her right leg
– botox injections in her calf muscles
– electric stimulation therapy for the muscles around her tibia

piper is one tough cookie…she started soccer last week and is determined to run with super cat speed! she’s really making huge leaps and strides and our goal is just to help her be the best she can be! she’s such a trooper with all these appointments… we love her whole team so that certainly is helpful!

i’ll do an update after gait lab with pictures… we’re SO excited for this!!