T+695 The End of 2011

We wish everyone happy Holidays!  I guess I better get one more post on here to make my numbers for 2011 look at least a little better.  I honestly don't know how I manged to keep this up before! 

We went to Orlando December 3rd for Torie's Make-A-Wish, and we had a spectacular time!  She loved every minute of it, and she really loved the Give Kids the World Village.  We enjoyed watching her as much as anything else.  The times when Torie was really, really sick and feeling horrible she would say, "Mama-Cheryl?  You take me to Disney now?"  It broke my heart to tell her we couldn't go then, but I promised her I would get her there again someday.  And sometimes I didn't know if I would be able to keep that promise.  That's what made this trip SO special for me.  We were watching a parade one evening and I was holding Torie.  She put her hands on my cheeks and said, "Mama, you bringed me here to Disney.  I love you."  Wow.  We did it.  Vic-Torie!

 

More Catching Up...

In July we met Rylie for a trip through the Aquarium in Denver.

They are so cute together.  We sure wish we lived closer!

"Dinging on the wano" (singing on the piano) with Cousin Kylie at Aunt Lettie's house.

Painting Mama-Great's birthday present in August.  And she got something besides a Torie, too!

At Tom's family Ranch in Arizona over Labor Day.  Torie got to meet so many members of this family.  Finally!

Torie and Uncle Eddy and Papa Tom...she loved it!

Cooper having S'more's.

And Torie joining him!

In Mesa for birthdays...Chase on September 7, Lexie on the 8th, and Makinley on the 27th.  And Brielle and Ryker, too!

Our last day at the Ranch...we can't wait to go back and see "Mo' Dousins!"

Torie the Monkey with her cute little banana!

And biggest news...Torie's Make-A-Wish is almost here!  We are going to DisneyWorld December 3rd.  Lots more to follow.  I promise!

T+655 and the Worst Blogger in the World is...

...Torie's Mama-Cheryl!  I can't believe it has really been so long since I updated this.  (This is the part where I make a bunch of excuses.)  With Torie doing SOOO great, and her new "Baby Butter", things don't seem to slow down much.  I'm back at work, Mom watches the kids most of the time, Lexie is still at Pantuso's, and we just finished a major remodel of our house.  And now the holidays are approaching....so this might be my last post for a while!  Just kidding.  Maybe.  I'm one of those people who procrastinate forever.  Then when it needs to be done there is so much to catch up on that it's overwhelming.  Like 5 months of happenings.  Jeez.  I think I'm going to have to do this update in several parts, so hopefully some of this makes sense.  This video is from July when Tom and Torie and I went to the Cabin in Wyoming.  This is up on top of the Snowy Range.  Guess why they call it that?  Yep.  July.  None of us had been to the Cabin for 2 years...since right before Torie was diagnosed with Hurler's.  It's one of our very favorite places!

T+551 Baby Brother!

 Ryker Quinn is here!  He was born at 8:31AM, and weighed 7 pounds, 5 ounces.  He looks about as happy to see his big sister as mine always does.  Torie thinks being a big sister is pretty neat, and I hope her little brother is as awesome as mine.  Lexie is doing great, and Greg came through the whole thing quite well, also. 

I'm sorry for not updating you sooner, but as you might guess, things have been busy here!  Torie is doing great.  She is off all of her medicines, and today she FINALLY started her immunizations.  It seemed like we would never get here!  She doesn't have to see Dr. Mike for 2 months - and then she'll get more vaccines.  The biggest news is that she grew!  She is just a tad over 37 inches.  It puts her at 1 percentile of height for her age.  But it's better than less than 1%.  She's "dainty".

We have tons of other stuff to catch you up on, and hopefully I'll get it on here soon.  In the meantime, thank you for being patient with me, and for all those prayers and happy thoughts!

The happy new family!

T+? Dusting Off the Blog

How did I ever mange this blog before we came home?  It seems that something comes up (usually bedtime!) and blows my good intentions.  It's T+498, and time has been flying.  Torie is doing so well, and here's some of what she's been doing.....

On May 24th she finally got back into Physical Therapy, Speech, and Occupational Therapy.  We had been trying to get her back in since we got home, but we were always told "We're too busy.  We'll call when we have an opening."  And we kept trying with the same results.  Lexie went to Family Health West one day and after telling them that Torie has Hurler's, and had a stem cell transplant, they said "She needs to be in therapy right away!  Can you start tomorrow?"  Hallelujah!  They are awesome...they have very few pediatric therapists, but they have all made room for her.  Even if it means they work longer days.  They were very worried about us having to get there 3 days a week, but the office is about a minute and a half from Lexie's.  I have to drive across town, so it takes me about 5 minutes!  Lexie and Torie moved to Fruita, and it's so nice having them so close.   

May 31st, Torie got her G-Tube (AKA the medicine tube) taken out!  She is still only on Bactrim on weekends, and she takes it in her mouth like a big girl.  Her labs continue to be in the normal range, and even her enzyme level has come up.  Her last one from the 31st, and it came back at 39!  Normal is anything over 25.  We couldn't be more pleased...this is what it's all about!                                                                   We spent last weekend in Ouray for my birthday with the Schmitt's.  Connie made a cheesecake, and Stacey helped Torie put candles in.  We only had to "put the fire on and sing" 3 times.  I love being 29.                                                         Speaking of birthdays, yesterday was our dear friend Deirdre's (Liam's Mommy) birthday, and today is Jerry's birthday.  He had a party at RMH today, and if you're into Facebook you can see pictures on his page.  (Put in "Jerry" in your search.  He's pretty famous.)  Mom and Dad left yesterday to head to The Cabin.  I'm so glad they were able to go.  They haven't been there for almost 2 years, and it really is time for life to get back to normal. 

One year ago today we left Minnesota and our friends there to start our journey home.  Torie is such a different girly than she was a year ago.  She sings, she dances, she swims, she runs, she thrives.  In all the time I spend with her, I rejoice in every moment - she is such a blessing and a miracle!  Vic-Torie!   

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!  

T+427 Papa Tom's Birthday



Cool girls in glasses!

  Tom's birthday is today, and we had a great camping trip to celebrate!  We didn't go far - just to Robb State Park here in Fruita, but it was far enough.  Torie and Tom and I were all thrilled to have Stacey and Matt join us.  John and Connie came for dinner one night, and it was so nice to see them again.  I haven't seen them since the Alaska cruise last September, and Torie enjoyed meeting them.  Lexie and Greg came for dinner the next night, and Torie loved telling them all about camping. 

I think Torie's favorite part was roasting marshmallows.  This was her first time!  And of course she loved decorating Tom's "cake" and singing Happy Birthday.  Having Torie camp with us was the best gift.  There were times over the last year that we didn't know if it would ever happen.  And she was able to be an almost "normal" kid.  She ran, and played, and rode her bike, and ate marshmallows!


My marshmallows!

  Monday's labs were excellent...hemoglobin of 12.7, platelets 246, albumin and total protein are both up, and her urine protein is still negative.  Today her Prednisone dose dropped to 5mg!  She is feeling great - running everywhere.  She very seldom just walks; she runs.  It seems like she really is getting there....Vic-Torie!


Roasting with Papa Tom




"That gooey.  I like 'em."




The candles may say "60" but Torie still says "Papa Tom 100."




"Now fire!"



T+417 Big Sister

Torie is going to be a big sister!  Here she is, holding the 1st pictures of her brother, Ryker Quinn.  He is 20 weeks today, and she is very excited to see him.  She knows that "Mommy has baby in her tummy," and every night when Lexie gets off work Torie asks if the baby is at home.  "I hug him.  I so excited see him!"  His birthday will most likely be August 8th, so she still has quite a wait.  You know how I've said that sometimes Torie just knows things?  Sometime in December, before Christmas any way, she told Mom and I "Mommy have a baby."  At the time she was totally enthralled (and still is!) with Baby Sydney and Baby Bella.  We really didn't pay much attention to it.  I guess she was right.  Again.  Lexie and Greg are at least as excited as Torie.  I'm scared.  I know it's irrational.  But after all we've been through with Torie, I'm scared.  And I don't know what to do with a boy except duck!  But this does give Tom and I three of each.  It evens up things nicely...3 boys, 3 girls.  Like Torie, Ryker will have the 4 greatest "Duzins" ever - Chase, Makinley, Brielle, and Cooper.  And I know Torie will tell him about the cousins right away....she talks about them every day.  "Mama-Cheryl, I go swimming with my duzins.  I push 'em in a water!  I yike duzins!"  I am happy for Torie; I know better than anyone that a little brother is one of the greatest blessings in the world.  And this baby will have the most supportive, loving family in the world.  I know, because they're always there for me!

Torie went down on Prednisone to 10 mg last Thursday.  And her labs today were great!  Hemoglobin came up to 11.9, platelets to 228, and WBC's to 5.6.  Chemistries are still all normal.  If she continues this way, she'll be off steroids in 5 weeks!  Imagine.  She could be off ALL her meds in about 4 months.  She is spunky, happy, and doing SO well.  And we owe so much to you...All your happy thoughts and prayers have gotten her to where she is.  We never could have done without your help.  Thank you, thank you! 

And as a quick last thought, Tom was the Facebook Friend of the Week of Ronald McDonald House Twin Cities.  We can never thank them enough either for being our home and family for so many months.  We think of all of them every day and we miss everyone there so much.  Please send your happy thoughts and prayers with ours to all of them there!     

T+411 "I'm 4!"

 Happy Birthday, Torie!  Today is the real birthday, and I've found myself thinking back to 4 years ago today, but also to a year ago today.  Even after celebrating every day that we've had her with us after this long year, today is still a milestone.  And after all of it, she is still so sweet and funny and charming.  In typical Torie fashion, today she asked if she could get a Happy Meal for her birthday.  Like I've ever been able to say no to her!  Especially today.

Her labs were a little low yesterday...hemoglobin went from 13.3 to 11.7.  She seems a little pale today, and a little puny.  But I'm not even guessing anymore - she always surprises me.  Today was (hopefully) her last 15mg dose of steroids.  Thursday she'll go down to 10mg.  Please send those happy thoughts and prayers that work so well that she tolerates this lower dose...you are appreciated!

T+409 Birthday Party!

 Uncle Shaun came over from Ft. Collins to celebrate Torie's birthday.  She had a great time, and we put fire on the candles and sang 4 times!  It's good we've all gotten used to the wax...

This was the first time our family has all been together since Thanksgiving 2009.  Just one more reason to celebrate our Vic-Torie!

T+407 "I Like Cousins!"

It's been ages since I posted, but you know that no news is good news.  Last Saturday the Bower's and the Beckerman's arrived to spend a few days with us.  And we had a blast!  Torie loved seeing everyone and especially loved swimming with them.  She had so much fun swimming and splashing and playing.  This was the first time she's been able to play with kids since we left Minneapolis and our friends at the Ronald McDonald House.  She had a smile on her face and laughed the whole time we were with them.  I was taking her home to Lexie's and she said, "Mama, I like cousins!"

Unfortunately, all good things must end, and they all went home to Arizona Wednesday.  Torie has been talking about Chase, Makinley, Brielle, Cooper, Auntie Heather, Auntie Erin, and Uncle Jason non-stop.  Uncle Colby wasn't able to join the tour, and we can't wait to see him next time.

Torie is down to 15mg of Prednisone every other day, and she's doing great with it.  Her last hemoglobin was 13.3, and her weight is down to 17.6...that's more than 2 pounds less than she was.  She is full of energy and she runs all day.  And we couldn't be more pleased with this Vic-Torie!