Today...

We are hovering somewhere between "totally fine" and "certifiably crazy." I'm gonna go ahead and call that a success. At the very least it's an improvement.  Baby steps, I tell you.  

Last week Liv had an EUA and a few more test to check for tumors.  Everything came back all clear!  She had another successful Botox surgery which we celebrated by eating Popsicles while still mostly drugged and then getting stuck in Snoqualmie Pass for over two hours because of an avalanche, to which Liv responded every ten minutes saying, "Let's.  Go.  Drink. Water!"

It was spectacularly awesome!

No, but seriously it was good news.  We were thrilled.  To be declared still caner free is amazingly wonderful news.  (And also, her ENT informed me that the other surgery he could do to help keep her off oxygen if the Botox didn't work is to do a tracheostomy.  Like, a tube coming out of her neck. So we are kind of super glad this works.)

The said drugged Popsicle eating.





Today we hit a little bit of a road block.  Liv is going to require some Dafos.  I noticed her feet, legs, and ankles were starting to turn a couple of weeks ago.  I pointed it out to her OT today at therapy and she agreed it was a problem.  It happened really quickly and is most likely due to her hypotonia (seriously folks, do your kiddos a favor and know the signs of this and catch it early, therapy is much more helpful the earlier you know about the problem).  I don't know a lot of details right now, it's a bump in the road for sure, but she has been through far worse.  We've totally got this.

Baaaaby steps.  Itty bitty ones.