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!