T+472 A Best Day

We wish today could be a National holiday, but for now we'll keep it to ourselves!  Today is 3 of Torie's best friends birthdays...Nick, and her bestest dearest twin-triplets, Josiah and James.  We hope their day has been as special as they are!  We love you, boys! 

 There's not much else new here.  This week we get to skip labs and the weekly visit with Dr. Mike.  After a year and a half, we finally get to go to every-other-week appointments!  Maybe soon we'll get to once a month.  We won't know what to do!  Now that Torie's only medicine is Bactrim on weekends, she has been trying to take her medicine "inna mouth like a big girl."  It does take some bribery, but the silver lining?  McDonald's donates a portion of Happy Meals to the Ronald McDonald House.  There really is hope in that box.  And we all know how grateful we are for that!  Anyway, hopefully we'll get her medicine button (G-Tube) taken out soon.  She'll be like a REAL girl! 
We've been able to go swimming at the new Fruita Rec Center a few times, and Torie loves it!  She loves her swimming buddy Stacey, and she has a blast at the "wimmy poo." 

With the crazy weather going on, our thoughts are with all our Minneapolis family and friends, as well as our Tennessee family, and our friends in New York and Texarkana.  Please keep them in your happy thoughts and prayers.  And once again, Happy Birthday Si, Jay, and Nick!
 

T+462 Happy Other Days

I can't believe how long it's been since I updated this!  No news is definitely good news, though.  Torie is doing great!  Her last dose of the devil juice (steroids!) was 2 weeks ago and she gets spunkier by the day.  Last week we did her ACTH stim test.  This tests the adrenal glands.  With being on steroids for soooo long - almost a year - Dr. Polgreen (Endocrinology) was concerned that her adrenals had forgotten what their job was.  Well, they're just dandy, thank you!  The test showed no adrenal insufficiency, and normal function.  Torie's labs look great; no sign of nephrotic syndrome, and her counts are great.  We also did an engraftment level last week and, drumroll please, she is 89% engrafted.  Woo Hoo!! 

Just over a year ago, May 9th, Torie stopped walking.  Well, she has stopped again.  She doesn't walk anymore - she runs!  Everywhere, all the time.  Her weight is down to 16.8kg and she has a belly button again.  With stopping steroids, she is off Omeprazole and Levaquin, and she is now off all of her blood pressure medicines.  That leaves her on 1, yes ONE, medication.  She is still on Bactrim, but hopefully it will go away in July.  She is even losing her fur and almost has 2 eyebrows.  Happy days indeed!  It has surely been a long roller coaster ride, but I think we're coming to the end.

May 15th is National MPS Day....put on your purple!  Torie and Josiah were at T+100 last year on MPS Day, and Zachary is the same this year.  Please wear purple for Torie, Josiah, Zachary, Rylie, Wyatt, Ethan and the rest of our Hurler's family.  Support makes such an incredible difference, and we are incredibly blessed!

I will never have the words to express our gratitude for all you have done for us.  Please know how very grateful we are for your concern, prayers, kindness, and happy thoughts.  Thank you, a thousand times, thank you.  Vic-Torie!