T+1001 Part II

 

 Ok, back to the tale of the summer.  Ryker had his 1st birthday on August 9th.  Torie made him a beautiful cake with plenty of blue frosting.  We all enjoyed it, but from the looks of Ryker, he appreciated it the most!  Ryker has to share his birthday with Stacey and Matt's new baby, Piper.  Torie was so excited to meet her, and she had to have a party for her.  She picked out a balloon and a cupcake, and of course we sang Happy Birth Day.  Throughout Stacey's pregnancy, Torie insisted that the baby's name was Rosie.  She has surprisingly been calling her Piper since she's gotten to know her better!

 Over Labor Day Torie and Papa Tom and I went to Arizona to see the "Duzins."  Torie's Baby Duzin was born August 24th, and that story will have to have it's own post.  Baby Laikyn is the newest addition to our family.  Torie kept telling Auntie Erin "She's a wittle tutie."  And yes, she's right!

Torie got to have a hotel sleep-over with her duzins Brielle and Cooper one of the nights we were there.  They went swimming, watched a movie, ate popcorn and had a great time!

Laikyn Elle Beckerman, AKA Baby Duzin

Cooper, Makinley, Brielle, and Torie

One of our days there was spent at the Aquarium.  We all had a great time, and it was so much fun to see Torie with all her Duzins.  She is absolutely crazy about her whole Arizona family and they are all so good to her.  She misses them all the time, and tells me about once a day, "Mama, my Duzins are far far away.  They my nice Duzins.  I love them!"

Chase, who Torie has renamed Big Duzin!

The middle of September we went to Minneapolis to start a study being led by Dr. Orchard and Dr. Polgreen.  The study is for kids at least 2 years post-BMT, and will look at the effects of having weekly ERT (enzyme replacement therapy) for 2 years.  Yeah, that's NOT a typo.  Once a week for 2 years.  Torie's NeuroPsych results in February were disappointing, but not surprising.  She had lost points from the year before.  She is making 50% of a normal level of enzyme.  After everything that Torie has been through, I would hate for this study's results to come out phenomenal, and have to say "I wish we would've..."  We just want to give her every chance we can.  And besides, we have huge admiration for Dr. Orchard, and we trust him with Torie's life!

Papa Tom was never able to spend much time with us in Minnesota, and he really wanted a turn.  So Mama-Great sat this trip out, and Tom got to sample some of our favorite places.  Torie loved taking him on the roller coaster at Mall of America.  We went to the Minnesota Zoo, and had lots of great food.  We also got to spend some time with our friend Amelia, and her mom Brooke.  She is doing so well!  And what a gorgeous girl! 

2:15, Recovery Room

 Tom was both amazed and exhausted by the schedule we had that week.  He definitely developed a new understanding of all Torie's visits, tests, clinics, docs, and appointments.  Torie had to have MRI's done, and she has to have general anesthesia for them.  They were also able to do her DXA (bone density) scan at the same time.  We tried to get it in radiology, but she was having nothing to do with that!  She had a Physical Therapy eval the same day as OR.  She woke up about 2:15, left the Recovery Room at 2:45, and we made it to PT by 3:00.  I think her results may have been a bit skewed since she could hardly stand up on her own!

All of her docs remain quite impressed with her.  Her echo showed some more thickening of the mitral and aortic valves, with more leaking.  Dr. Braunlin thinks Torie may have to go back on Enalapril eventually.  But maybe enzyme will help with this.  Her latest engraftment levels from the week are pretty stable;  CD3=90%, and CD15=77%.  And Torie failed the treadmill test due to a lack of participation.  She got on for a minute, but when they pulled out the face mask it was all over!  We will go back in March to repeat all the tests, and again at 12 months, 18 months, and 2 years.  And I thought 16 doses pre-BMT was bad.  Geez.  It's gonna be a long 2 years! 

3:00, PT!

 The week after we got back from Minnesota, Torie started preschool!  She loves going to her school, with the exception of not getting to ride a bus.  Oh well.  She has school on Monday, Wednesday, and Friday afternoons.  She has OT and speech on Wednesday mornings.  And we spend all day Thursday at the hospital for infusion.  For a 5-year old, she's got an awfully full schedule! 

So, that kinda catches you up on our girl.  She is so energetic, and vibrant, and full of life.  She brightens every room she walks into, and she is a constant source of entertainment and laughter.  She is truly a joy.  And we owe you so much for those constant happy thoughts and prayers.  They really do work!  Vic-Torie!

T+1000!

 After just 7 short months, I'm finally getting a post on this poor neglected blog.  I've frequently had good intentions, and then something else seems to be going on and it passes.  It has been 1000 days since Torie and Josiah's transplants.  Yes, I really do still keep track.  Some days it seems so long ago, and other times it seems like just yesterday.  Torie is doing awesome!  She is so full of energy and never seems to slow down. 

Torie loves her purple glasses, and she is great about wearing them.  She wants to put them on as soon as she gets up, and she's really good about leaving them on.  Her vision is stable and she hasn't had any changes.  She's also a champ about wearing her hearing aides.  She asks for them when she gets up too.  We can tell a definite difference when she has them in.  Her speech is much clearer and she does hear better.  Too bad they don't help with listening!

Dr. Deering (orthopedics) did Carpal Tunnel release on both Torie's hands in June.  She sailed right through it.  The only time she ever complained was 2 days after surgery.  She said "Ow, Mama. My hands hurt. I need to roast a marshmallow."  (We were camping.)  And that was it.  We wonder if maybe they feel better now. 

{WARNING----the next picture is pretty graphic!}

Dr. Deering told me that as soon as she made the incision into Torie's hand "the nerve bulged out just like delivering a baby."  (The worm-like thing between the retractors is her nerve.)  Because of that grayish-white color, Dr. Deering was very concerned that the nerve wouldn't get bloodflow, but as soon as she released it above and below it pinked right up.  She was quite impressed.  She'd never seen a nerve that big, and even got one of the adult docs to come into the OR to look and be impressed and take pictures.  That's our girl.  She does know how to impress people.  Too bad it's not for her stellar manners!

Torie and Ryker both had a great time swimming this summer.  They do love water!

In August, Tom and I traveled to Rochester, New York, for the wedding of our sweet boy Joseph's mommy and daddy.  Kim, my BMT sister, and Pat finally made it official.  I pretty much bawled through the whole thing.  Joseph is excellent!  Parents of Special Needs kids only have about a 20% chance of staying together.  To see them married and with their awesome boy made the day even more special!

The middle of August, Tom and I took Torie and Ryker to Wyoming to the cabin for a week to see the Great's.  Torie had a birthday party for Mama-Great, and made her a special cake.  This kid sure loves a birthday party!

All right, I'm caught up till almost the end of August.  Tune in tomorrow on T+1001 and I'll finish up.  I've got way more to fill you in on!  Thanks for coming back and checking on us.  And a very merry T+1000 to 2 (and there are lots more!) of the toughest kids I know, Torie and our Strong Sweet Si.  The grace and courage and strength that kids have will never cease to amaze me!  Vic-Torie!

T+777 Torie's 5!

 Happy Birthday to Torie!  We celebrated her birthday with a small family party, but we missed having Uncle Shaun here.  He'll be here tomorrow, though.                                                Torie and I were talking about her birthday a while ago.  I asked her what she wanted to do, and she said she wanted " a purple party.  With a purple cake.  And ice cream inna cone."  Tuesday we went to pick out her cake.  She told the baker she wanted "a purple cake.  With flowers."  I asked her what kind of flowers and she told me "the frosting ones."  (Yes, another forehead slap.)   The she said, "And I wanna blue one and a pink one and a orange one and a yellow one with green leaves."  I picked it up earlier today, and it was just, uhm, beautiful.  She loved it.  It was exactly what she wanted!                        

 She got a Jessie doll from her Mommy and Ryker, and it was by far her favorite present.  She loves "Yessie."  She couldn't get it out of the box fast enough!      

Torie has had her hearing aids for about 3 weeks now and she does excellent with them.  Just like her glasses, she doesn't take them out, and wants them in as soon as she get up.  We really hoped that was how she'd do.  It's been much easier than we thought.  She's just that good! 

Thanks as always for checking in.  I sometimes feel bad that I don't get this updated more often.  But more frequent updates generally means things aren't going so great.  So I don't feel that bad!  She is excellent!

More Pop Tabs

AAAARRGH!  I had to start a new post; I lost the rest of the pictures, and in my blogging ignorance, I don't know how to add them, hence, an addendum.  Silver lining?  I already have a post for March! Maybe it's a sign.  Anyway, this'll all make more sense if you scroll down to the previous post first.  I probably should have told you that at the very beginning instead of all this drivel!

So anyway, Torie loved the new castle.  She was a little hesitant about going in RMH the first time.  She told us again, "I have to go home.  My Mommy needs me."  Hopefully it will get easier going back since we only did the week vacation! 

When we got back, we went to meet Girl Scout Troop #140 in Grand Junction.  They have been collecting pop tabs for Torie.  83,500 pop tabs.  55 pounds of pop tabs.  How incredible is that?  Torie and Papa Tom mailed them to Jerry.  The Girl Scouts also gave Torie a Girl Scout bunny, complete with a skirt, a sash, and badges!  What an awesome group of girls. 

February 29 is National Rare Disease Day.  (Once every 4 years?  Really?)  Just this year we have lost 8 MPS kids.  And that's only MPS.  There are so many others, like 7000 different diseases.  Please send some happy thoughts to our friends - -Josiah (who needs lots of prayers, he had his hip surgery yesterday and is in a lot of pain), Joseph, Liam, Baby Sydney, Angel DaNNY's family, Gracie Larson, Cuyler, Zachary & Amelia, Wyatt, Ethan, Rylie, Bella, and so many others.  And as always, there are never the words to say how much your support means to us.  Without you, our Vic-Torie wouldn't be as sweet! 

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?