T+382 Home...and More!

The big news?  After six and a half months, we are home!  We left our home-away-from-home, RMH, and Minneapolis last Tuesday morning.  Torie was SO excited...as soon as we hit the Interstate, she started yelling, "MOMMY!  TORIE'S COMING!  I COMING HOME!"  Like always, she did excellent on the way.  We made it to Kearney, Nebraska and the hotel had a pool.  Torie hasn't been in a swimming pool since December.  Of 2009!  She jumped and swam and kicked and had a great time.  Wednesday afternoon we got to Shaun's house in Ft. Collins.  Sadly, Collette wasn't able to make it, but we were glad to be in Colorado...finally!  The roads were dry until we got to the Eisenhower Tunnel, and we

hit snow that made it a bit slow-going.  After 1200 miles we got to Fruita and Mommy!  And Papa Dick and Papa Tom.  It's SOOO nice to be home with our family and friends under the blue, sunny Colorado sky!

Lexie is thrilled to have Torie home, and Torie's thrilled to be there!  It's great to see them back together.  Torie is still running everywhere, and jabbering non-stop.  Yesterday was Dad's birthday, and Torie put the candles in the cake, and then wanted "fire on the candles."  We sang Happy Birthday and blew out candles.  4 times!  Then she decided she was going to cut her piece - after she'd already taken a few tastes.  Just watching her is the greatest gift Papa Dick ever got.  For the rest of us, too!  We tend to all sit around and watch.  When we think back to a year ago, and she was so sick, to have her getting healthy and being happy is the best thing ever.

Today we had labs at St. Mary's, and all is looking good.  Next week we'll try to wean Prednisone (the steroid) down to 15mg every other day.  Keep your fingers crossed!
 
We miss our friends at RMH, especially our Hurler family.  Today Zachary is T+17, and he's still in PICU on a ventilator.  Derek is T+10, and he's hanging tough.  Ethan is still waiting, and will have a CT next week to see if they can finally get started with transplant.  We know that your prayers and happy thoughts make a huge difference, so please send them to our boys.  Grow cells, grow!  And thanks for sticking with us as we get closer and closer to Vic-Torie!

T+375 Go Home!

On Valentine's Day last year I posted that it had been 6 weeks that we'd been here.  We've made up for the 6 weeks we were home, so we've now been here for 1 year.  I never thought we'd be here this long.  One year ago today, Torie was so sick and she was at T+10.  So long ago and still so near.  Lexie was here a year ago today, and I can't imagine how hard it was for her to leave her baby girl.

Remember how I've said that sometimes Torie knows things she really shouldn't?  Thursday I asked her if Dr. Orchard would say "Go home."  She told me, "Not yet."  And she was right.  This morning I asked her the same thing.  She said "Dr. Orchard tell Torie 'Go home to Colorado.'"  And she was right again.  Labs came up nicely with Prednisone increased to 20mg every other day.  Soooo (drumroll), we are leaving in the morning!  The room is cleaned, the car is packed.  Torie is so excited...she keeps saying "Torie see Mommy.  And hug her and kiss her.  In Colorado.  See Papa Dick and Papa Tom and Uncle Shaun.  And go swimming with Stacey!"  We can hardly contain ourselves, either.  I keep thinking we might as well leave now because I don't think we'll sleep.  We'll stay in Kearney, Nebraska tomorrow night, and with Shaun Wednesday night.  In Colorado!  And Aunt Lettie is going to meet us at Shaun's house.  We haven't seen her since Torie's last IV ERT in Denver.  She has been such a support, and we have known that she has thought of us every day.  We will be home (What a word that is...HOME.  It's something we've tried not to think of too much and now it's so close!)  on Thursday.  There really is light at the end of the tunnel, and it is the warm Colorado sunshine!

Tonight was another Parent's Night In dinner.  And, like the others, it was delicious.  I officially have the record for attending the most dinners consecutively.  Needless to say, I'm more than ready to pass the crown!  We sat with Todd and Sarah, Ethan's parents, and Brooke and Mich, Zachary's parents.  It is so hard to say Good-bye's.  To both the families and the staff here.  They have been our family for so long, and they have made The House a home.  We are so blessed by all those here.  It's hard to leave.  While we are so glad to be going home, we will so miss everyone here.  Our lives have become so inter-twined.  It's hard to leave with two of our Hurler family still in the hospital, and one waiting to start.  Please keep them, and all our other friends that we have made here in your happy thoughts and prayers.  Once again, I don't have the words to express how much your support has meant to us over these long months.  Thank you for helping us reach Vic-Torie!

T+372 6 in The House!

As of yesterday, there are 6, yes 6, Hurler kids here!  Who said Hurler's was rare?  As you know, Josiah is here, and we are really enjoying being able to spend time with him, Rachael, and Jim.  This is the first time in the year that we've known them (although it seems like we've known them forever!) that Torie and Josiah have both felt good enough to play together.  And are they ever cute!  I could watch them together for hours.  They really are the Twin-Triplets...we wish James could be here to have the complete set.  Last night Josiah shared his chicken nuggets during bingo, and then they spent quite awhile in the House 3 playroom.  They were joined by Allison, who is 10 years old and here for new ear tubes.  She has 

not had a transplant, so she gets weekly enzyme replacement.  She just had her 400th dose.  (It makes me feel very petty for complaining about 24 of them.)  She is an absolute dolly, and super sharp.  She was trying to tell Rachael and I about iPads, and 4G phones.  Needless to say, she was way over our heads!

I wish we could have gotten Ethan in the picture, too.  He has been delayed for transplant for a while longer.  We're so glad to have such a great family to wait with.

Zachary is in the hospital, Day T+7, and when I talked to Brooke, his mom, she said he is doing

great...Hooray!

And last, but hardly least, is Derek.  He is inpatient too, and today was his transplant.  Very merry Un-Birthday Derek!

Thank you all for your encouraging comments.  We appreciate them so much, and thanks for the continued happy thoughts and prayers.  Please send them to our Hurler family, and for safe travels for the Carman's; they are leaving in the morning.  Just once I'd like to be able to leave before them!

T+371 On Hold...

Oh, how I wish I was telling you that the car is loaded, and we're ready to go.  But that's not to be right now.  Torie's counts have dropped again.  Since Monday, Platelets have dropped from 198 to 170, WBC's from 5.5 to 5.0, and hemoglobin down to 10.9 from 11.8.  That's almost a gram in 3 days.  And it's 2 grams less than 10 days ago.   Aaaarrgh!  We are increasing her steroid dose; Sunday she got 20mg, and on Tuesday we dropped it to 15mg.  Dr. Orchard feels that her Hemolytic Anemia/Evans Syndrome just doesn't like lower steroids.  The new plan is to increase her steroid dose back to 20mg and check labs on Monday.  Mys-Torie.

We are so disappointed, and so is Lexie.  We want our family back in the same state!  But we'll take one day at a time like we've been doing until we get Vic-Torie!

T+369 Ready To Go!

I apologize for not updating yesterday, but Mom and I are wiped out!  Torie is feeling great, and she's FULL of energy.  Everyday the first thing she says is "Torie go home Colorado and see Mommy."  We've been telling her that we had to wait until we see Dr. Orchard.  Yesterday morning she woke up and said "I go to PWB (where the BMT Clinic is; it actually stands for Philips-Wangensteen Building), see Dr. Orchard, then go to Colorado and see Mommy!"  It was really hard to try to explain to her that we still have a few days, even if we get the go-ahead.   As soon as Dr. Orchard walked in the room, Torie quickly informed him that she is "ready go to Colorado now."  And Dr. Orchard said "Don't you want to stay in Minnesota with me?"  Torie replied, "Not stay in Minnesota any more.  I go Mommy's house and hug her."  Maybe it was because she threw in the "hug her" part, but Dr. Orchard told her that she better go and hug her Mommy.  He does want to do a last lab check on Thursday because her hemoglobin and RBC's dropped a little again, and he wants to make sure the come back up and aren't trending down.  But our plan is to leave here Friday morning.  Finally!  The light at the end of the tunnel is getting closer every day.  Please everyone, cross your parts and say a prayer!

Saturday evening we were surprised by a knock on the door (we don't get many visitors!).  Much to our delight, it was the Carman's!  Josiah looks awesome, and we had a great visit.  There's a Silver Lining - we get to hang out with them all week.  I know I've said before how fortunate we are to have gone through this with them, but I have to say it again.  We are so fortunate and blessed by their friendship.  I always feel like I can never spend enough time with Rachael.  I often wonder if God felt that last year my faith wasn't enough to make it through all this, so he sent the Carman's, especially Rachael, to teach me and share theirs with me.  They are such  special family, and I'm grateful for them.  Josiah is having his 1-year tests, and a hernia repair tomorrow.  Please keep him in your happy thoughts and prayers.

We are packing boxes, and we have an eager helper.  We have no idea what is in any box, because she'll pick things up and put them in.  "I packing to go to Colorado!"

  

T+365 Merry 1st Un-Birthday!

Can you believe it?  What a year it's been!  One year ago today Torie got that little bag of "new blood" that would change the rest of her life.  We are still grateful beyond words for the mother that donated her baby's umbilical cord blood.

 Many things have changed in the last year... Torie's DNA, no pacifier, and lots of hair!  Or as Torie says, "Not have a bink any more" and "My crazy hair."  We had a little un-birthday party, and we are very happy that Diedre and Liam were able to be here for it.  (Liam had to get a new port.  He's doing great and every time we see him he's grown a few more inches.  It is so nice to see them!)  We had to "fire" Torie's candle and sing a few times so she could "blow the fire out."  After her party was Pre-School and she again had a blast.  She loves Katy almost as much as school, and she always wants to go back after her nap. 

Today was also Josiah's 1st Un-Birthday, and he should be here tomorrow if the Tennessee snow isn't too bad.  We are SOOO looking forward to seeing him and "the Mommy and the Daddy."  Zachary had his transplant today and is doing well.  Three Hurler kids with the same transplant day.  How cool is that?   

Again, we never would've gotten through this last year without all of your support, happy thoughts and prayers.  I will never have the words to express our gratitude.  Know that we think of all of you often, and how much we appreciate all you do.  With your help every day we get closer to Vic-Torie!