sharing info from end of September (Selma I forgot to post it)
The children's hospital was good today!
They were very thorough and even knew what EDS was:)
They even commented on her loose kneecaps.
They do suspect cranial instability for Ry.
They sent her for neck and complete spine X-rays.
They will review them and refer us to the spine Dr and PT at children's
She said PT is a fine line because the joints are hypermobile so we must be
careful there but she has some muscles that are too tight trying to compensate
so we need to find a happy medium.
They are referring her to genealogy too.
She said we don't need genealogy to know she has EDS but it is a piece of the
She also ordered cardio and agreed with me that POTS was something we need to
So it's a start and I'm excited they didn't look at me clueless!
They also said soccer is probably a bad idea:(
Yeah I just copied and pasted this from our old email because you asked me to share it so you knew more current information too:) still might be helpful for others to see the journey if they are starting later than us
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