Give an inch, Take a mile

Roa got his new AFOs and SMOs at Shriners last Friday. Another long appointment, 2 hours!  UGH! Shriners is such a great place with such nice, helpful staff.  However, I don't believe we will be going back there. We have been so happy with Gillette and Winkley Orthotics.  Also, Shriners is going to start taking insurance, so there is no real benefit to going there for us.

 While being fit for his new orthotics, we noticed that the floor of the brace went quite a bit past Roa's toes.  I asked them if we could cut it back, as Roa is used to "free toes".  I also was concerned that we would have to buy shoes 2 times the size to fit this brace and that would hinder Roa's walking. 
They explained to us the reason why the brace goes out so far (due to toes clenching and increased tone) however, I don't want to take away his walking.  I think the staff was really quite surprised that Roa does as much walking as he does.  He can still get in his gait trainer or stander, they said.
  We kept repeating, "He walks EVERYDAY in his gait trainer."... on nice days, he WALKS the entire length of our street.
They did as we requested and cut back both pairs of new braces past the toes.  They told us they wouldn't be surprised if we come back wanting to redo after our doctor and therapists see.  I guess we will wait and see what happens...  But they don't know our Roa.  (They asked about "assisted seating" or a wheelchair... SIGH...)
It is not their fault they don't know that if they make his braces uncomfortable for movement and take away our walking,  life at the Thayers would be pretty unbearable!

Roa's WBL therapists have spring break this week, as does Andrea at Courage.  It is a lighter work load this week with speech at Functional Kids and Conductive Ed.
We have been working on slowly introducing the new braces and Roa is responding pretty well.  It helps that he got new shoes too!  Such a shoe lover, this boy! ;)

Back to the assisted seating/wheelchair idea...  We know the time is coming that Roa will need a wheelchair or push chair.  He is growing like a weed and is getting hard to carry.  But for now, we hope to rely on his current stroller and the gait trainer.  School in the fall will bring us in to the world of assisted seating for mobility.  Until then, off we walk, gaining strength as we go... God willing.