13 Pavements

Wednesday, March 28, 2012


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.


  1. Me want popsicle...

    Dafos are so cool nowadays. When my little bro got his, he chose a blue snakeskin pattern and a huge picture of Taz the Tazmanian Devil. Classy!

  2. Julie...you don't know me, but you know my husband (Nate Conder). He has such good things to say about you, and I have been following your blog for a little while. I am so inspired and uplifted by your sweet family. You have a strength far greater than I can even imagine. You are so full of faith and hope and love! And Olivia is just such a darling girl. Thank you for giving me hope and the determination to carry on.