A visit to the ER

Rett Syndrome has robbed so much from my child already – her voice, her ability to use her hands purposefully, her ability to breathe normally, her independence. The latest: it’s been robbing her of her ability to pee.

With Rett Syndrome – everything, and I mean every function that the human body needs to thrive – has the capacity to fail.

Lily was feeling absolutely miserable last Sunday. She hadn’t peed in over 24 hours though her liquid intake was normal over this time period.  And I was hopeful that she had a UTI, as this could explain the urine retention, but alas the results came back negative.  So I guess we got one answer – it wasn’t a UTI.

So I turned to the Rett Syndrome family support group to see if they had any suggestions and one mom sent me to this article.  I remember hearing that some girls with Rett have trouble peeing from time to time, but I never knew the extent of how dangerous it could be.

Next step? Adding another specialist to the list – a pediatric urologist. And likely I will need to learn how to catheterize my sweetie. We can’t go to the ER every time she needs to pee.


Thank you!

The other week I launched a matching campaign to celebrate Lily’s birthday.  I was overwhelmed by the donations that came pouring in.  Within 24 hours, we had raised well over the $1500 target.  The campaign is now at 12% of my fundraising goal for the year.  Obviously we still have a ways to go but please continue to share this link with family and friends near and far.  We are getting so close to a cure and holy cow do we need this now more than ever.


Scenes from a Lily Poppins Birthday Party!