T+755 Minnesota & Pop Tabs



Happy Leap Day!  I guess I have to take advantage of the fact that I only have to post on this day every 4 years, because I seem to be procrastinating otherwise!  We went to Minnesota for Torie's 2-year post transplant work-up, and they were amazed to see how different she looks.  The most exciting news came from  Dr. Polgreen, Torie's Endocrinologist.  Her growth velocity is 99%, which is about 3.5 inches per year!  She is 38.25 inches tall now, and that's puts her into the 1st percentile of height for age.  She got on the chart!  And Dr. Polgreen thinks with her levels of growth hormone that she'll continue to grow.  She'll probably never play on a professional basketball team, but nobody in the family does.  All I want is for her to be tall enough to go on all the rides at Disney and get pedicures with me.  What else does a girl need? 

The new hospital and Clinic is amazing!  It's huge, and just stunning.  It's nice to see what we feel are world-class services in a building that matches.  It was awesome to see so many familiar faces too.  It was a little strange also; we used to see these people at least once a week (and usually more!), and it's been a year.  Life really does move on.  Sometimes it takes distance and time to really realize it, I guess. 

As soon as we were on our way to the airport, Torie started saying, "I have to go home.  My Mommy misses me.  I have to take care of my baby brother."  And she kept saying it the whole time we were there.  Mom and I finally realized that she probably thought we were going to stay for 6 months again.  She had a great time seeing her friend "Jopesh", and I was thrilled to see his mom, one of my BMT sisters, Kim, and Joseph's daddy Pat.  We stayed at the same hotel, and hung out a bunch.  Definitely the highlight of my week!

Torie's Neuropsych evaluation was disappointing, however.  She has lost points in testing over the last year, and she really hasn't progressed much.  We've noticed this so it wasn't a complete shock.  But still disappointing.  She is testing in all areas at about the level of a 2 1/2- to 3-year old.  Because of this, we've decided to have her take part in a study Dr. Orchard and Dr. Polgreen are doing.  Torie will start back on Enzyme Replacement Therapy (ERT) soon.  This is the same enzyme, Aldurazyme, that she was on before transplant.  She'll get ERT once a week for the next 2 years.  It is a big commitment, but after all we've put her through already, it feels like it wouldn't be fair to give her every chance.  I'd hate to see fabulous study results in 3 years and think, "Dang.  We shoulda done it."  We'll have to go to Minnesota every 3-6 months for testing and evaluations, and we all know what that means.  More Punch Pizza! 

Torie took 32 pounds of pop tabs with us, and we put them in the pop tab house at Ronald McDonald House.  She was actually more excited to see Jerry than anything else, and Bad Mama (me) forgot her camera that day.  I did have my camera when we went back another day, and they have a huge castle in the House 1 playroom.  (The one that had the big tree house in it.)  The castle takes up virtually the whole room.  It's enormous!  It's a two-story, and has a spiral staircase.  Yep. I had flashbacks.  I didn't even think about trying it!  Amazing.  Just like everything RMH does - BIG.

T+730 Un-Birthday #2!

 A very merry Un-Birthday to Torie and Josiah!  And a very merry 1st Un-Birthday to Zachary!  We had to celebrate with a party, of course.  Torie kept saying "Santa bringed me more presents!"  She doesn't really get it, but boy, do we!  We are so thankful for how well she is doing, and how far she's come in the last 2 years. 

We are getting ready to go back to Minnesota for her 2-year post-transplant follow-up.  I sure hope we don't stay for 2 years this time!  I'm not really worried about it though.  Her labs are great.  Even the test for antibodies in her blood was negative, meaning that the Evan's Syndrome/Hemolytic Anemia are in remission.  Her Engraftment level came back with a CD3 of 92%!  Her CD15 level dropped to 79% so we're waiting to see what her enzyme level is.  Her EKG and Echo were good, and maybe even a little better.  She got her glasses ("Pink!  Yike Wy-ie's!"  That's "Pink!  Like Rylie's!)  a few weeks ago and she does great with them.  I never thought maybe her vision wasn't so great since she can see things about 4 miles away.  But she reads books now and points out letters.  Bad Mama-Cheryl.  I did think maybe she needed new ear tubes, but she also needs hearing aids and will be having the molds for them done this week.  While they put new tubes in yesterday, they also took out her adenoids.  She had some dental work done too.  They cut back her gums a bit, but no cavities!  She loves brushing her teeth and she must be doing a good job of it. 

We never could have made it through the last 2 years without the support of our families and friends.  We are so fortunate!  Thank you for helping us get so far!   Vic-Torie!

"That Dindwewa's Datle!"  (Cinderella's Castle)

"I hab dandy wetyet on"  (I have candy necklace on)



"Tank you por my dake, Mama"  (Thank you for my cake)

"I bwow out the dandles!"  (blow out the candles)

This picture doesn't really need anything, does it?

In the Recovery Room yesterday.  The nurse asked if she wanted a cracker and she said "I want some M&M's"

Last year at her 1st Un-Birthday party.  Is this really the same Torie?