Team Building

Wednesday, September 18, 2013

Today we began the process of building Alli's therapy team.  We met with her new OT and PT.  I wasn't totally sold on her OT, but her PT knocked my socks off.  We spent almost 3 hours dissecting Alli's medical history and current abilities and limitations.  Besides our last PT (who was amazing) she's the first one that has EVER said, "Yes, your baby will walk.....she just may be 5 years old when we get there."  Barring debilitating  seizures or some unknown factors at this time, she felt confident we'd get there.....which we already knew, but it ALWAYS feels good to have someone else say those words. 

Her basis was a test I'd never heard....The Gross Motor Function Classification System for Cerebral Palsy.  The test is based on self-initiated movement, with emphasis on sitting, transfers, and mobility.  Based on the test, which again it's just a test, I'm not holding anyone's foot to the fire, Alli will walk independently between her 4th and 6th birthday.  It's NOT a promise, but it's so encouraging.  She will probably never be able to run, but heck...with those lungs, we didn't expect her to be a marathon runner anyway.  Singer?  Yes.  Athlete?  No. 

We're readdressing her leg braces, walker, ordering a compression vest, and being referred to the seating and wheelchair clinic (the wheelchair part took my breath away, but after she explained everything, it will be more than beneficial for our girl.....especially, since she will be starting the special education Pre-K program soon).  And that's a whole other story! 

We now wait for feeding and speech evaluations and then will have a team meeting of all therapists (is that even for real??).  Meanwhile, we have referrals in to Neurology and GI departments at St. Louis Children's Hospital.  There is not a Pediatric GI recommended in Springfield and we have conflicting opinions on whether or not to treat her seizures.  We desperately need a third opinion.  We were under the impression these seizures were non-epileptic, but the new Neuro believes they are epilepsy and effecting her development.   Waiting, if it is a misdiagnosis, could be detrimental to our girls brain and development.   And we don't need any more detrimental. 

Feeling rejuvenated after such a great PT evaluation and looking forward to our work ahead.  God always lines it up.  Always.   

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