T+330 What A Year It's Been...

I'm sitting here trying to think of something witty to post, and I keep thinking of my post a year ago.  What a year.  We're definitely ready for a new one.  And you, dear readers, will be burdened with "A year ago today..."   So I may as well start now.  A year ago tonight Torie, and Mom, and I were packed up and ready to start this journey.  I was so scared.  We had no idea what 2010 would hold for Torie.  Or for us.  We have all come so far.  And it amazes me every day how this little red-haired bundle of life has taught me so much, and how much joy she brings to so many.  One year ago I hoped for the grace and courage that Torie has shown.  And this year I hope for the same.  I don't think I've gotten there yet. 

We have been on a roller coaster this year.  I know the ups and downs will continue, but I hope they won't be quite as steep.  I don't have the fear that I had last year; Torie is improving every day.  We still don't know what her future holds, and we continue one day at a time.  That's the future...each new day that she laughs, and she runs, and she plays, and she learns.  We celebrate small Vic-Tories. 

 
I treasure the Silver Linings.  If I didn't look for them, I'd go crazy.  (I know, you're thinking "crazy-er.")  I have such a new appreciation for my family...The Moscrip's, the Baxter's, the Dominy's, and the Flake's.  And the new family we have - the Hurler's and the Ronald McDonald House's.  And friends that have been supportive beyond belief.  Oh, we are truly blessed.

We are ringing in the New Year quietly.  We took Papa Tom to Mall of America today and rode the Merry-go-Round.  After that we had great pizza at Punch, and Torie's favorite, spaghetti and meatballs, for dinner.  (The temperature is dropping to single digits, and more snow is on the way.  How lucky that we were able to be here for the snowiest December recorded for the Twin Cities!)  The House delivered a bag filled with candy, popcorn, noisemakers, hats, games, and sparkling grape juice for the party.  Torie had her grape juice "with bubbles" about 8:30, and she was done.  Mom and Tom and I watched the ball drop in New York, and now we're done.

So raise a glass of kindness, dear, for auld lang syne with Vic-Torie and have a very healthy and happy New Year!

T+328 Doing Better!

Thank you for the prayers and happy thoughts...they worked again!  Torie has been afebrile since early yesterday morning.  She's kinda puny, but she still doesn't have any symptoms that something is going on.  Today's labs were much improved...WBC's 6.3, Hemoglobin 12, platelets 120, and best of all,  BUN 32, and Creatnine 0.36!  Hooray!  She had her 2nd dose of Rocephin this morning, and we go back to Clinic in the morning for labs.  It's nice to have a week that was only one step back and two forward.  It won't be long till Vic-Torie!

T+327 Back to Clinic

It seems that the holiday is over, and it's back to "normal" stuff.  Shaun left Sunday night, and Dad left this evening.  It was so nice to have them here, and we all miss them already.  Torie had Speech and OT yesterday and did great.  Last night though, she ran a fever of 101.9 and it came down with Tylenol.  This morning when we got to clinic her temp was normal, and they thought she looked great.  She seemed a little pale, and tired, but she was up from 12:30 until 3:30 in the morning.  I think we looked about the same!  They did blood cultures, CMV, Adeno, and EBV cultures, along with her other labs.  Her WBC's are high at 13.7, and her hemoglobin and platelets both dropped - 10.8 and 109.  Her Albumin and Total Protein both dropped also - 3.4 and 5.8.  The most surprising was her BUN and Creatnine.  They were up to 88 (normal 2-19) and 0.99 (normal 0.15-0.53).  These are indicators of kidney function.  Her values have tripled since last week.  Dr. Wes decided that since Enalapril can cause Acute Renal Failure, and with her Creatnine so high, to hold her Enalapril for now.  The good news of labs is that her urine Protein is negative, so we'll stick with every other day steroids for now.  She also got a dose of IV Rocephin (antibiotic) just in case she's got something bacterial going on.  We go in for more labs and Rocephin tomorrow morning.  Every time she seems to be doing so well, she pulls some kind of new trick.  That's our Mys-Torie!

Please keep our friends Joseph and Sydney in your prayers.  Joseph had a shunt placed in his head today to drain extra fluid.  He is doing well so far, and we can't wait until he comes back here in a couple of weeks.  Baby Sydney was all set to go home tomorrow, but she was admitted to the hospital Sunday morning with Adenovirus, and she'll probably be there until the end of the week.  Thanks for all you do...we are grateful! 

T+326 One Homemade Blanket

Torie got this amazing quilt from her AZ family and this is the card that was with it....

"Torie -
We made this blanket special just for you because you are so special to our family.  We hope that when you are having a particularly hard day, you can snuggle yourself up in this blanket and feel comforted as you feel our love around you.  We specifically placed you in the center of this blanket with all of us around you to symbolize how we are all encircling you in our hearts.
            Stay Strong Torie!  We love you!

                         Merry Christmas!
 
 Hugs and Kisses all the way from AZ!

Heather, Colby, Brielle & Cooper
Erin, Jason, Chase & Makinley"

I can't wait until Torie is old enough to understand just how awesome this gift is.  Mom and I both cried reading the card.  We are so blessed to have these 2 families in our lives!

T+324 Merry Christmas!

Santa came and left a ton of presents!



He brought Torie a card




and a white present for Teddie.




Bitty Baby got a new outfit.




And Torie got a lot of pink presents.




He even brought her a real digital camera.




And the biggest pink present was a Disney Princess kitchen...she's been cooking all day!



She got a new Tinkerbell flashlight and she loves having Tink fly all over and land on us.  Make sure the volume is up when you play the video.  Seeing and hearing her like this makes the last year worth it, and her laughter is the best present that the rest of us got!  I'll be posting pictures of some of her other wonderful gifts over the next few days.  Please remember our dear friends that we've met here, and especially the ones who aren't with us any more, in your Christmas thoughts and prayers as we are keeping you.  Thank you a thousand times for all you've done for us and for Vic-Torie!

T+323 Waiting for Santa...

Santa stopped by to deliver gifts from the Ronald McDonald House.  Torie said "He stopped to feed the reindeer and the cow."



The 2 big blue bags full of RMH gifts.



A vintage Cabbage Patch Doll from Great-Karen.  It was my cousin Danielle's.



Rudolph the red-nosed red-haired reindeer!




Decorating cookies for Santa.

 And we heard him exclaim as he drove out of sight, "Merry Christmas to all, and to all a good night."

T+322 Let It Snow

Guess what?  We're getting snow!  That probably doesn't surprise you.  Silver Lining?  It's nice to be guaranteed a white Christmas.  Torie is getting very excited about Santa coming.  She is loving the 12 Days of Christmas from the House and from her Arizona family (Thank you B&B's!).  She is also loving having Papa Dick and Uncle Shaun here.  We didn't tell Mom and Torie that Shaun was coming.  I picked him up at the airport yesterday morning.  We came back to the House and Mom, Dad, and Torie were down in the playroom.  Shaun walked up behind Mom, put his hands on her shoulders and said "Hey."  She thought it was Todd, Wyatt's dad.  She didn't say much else, and I told her she better look and see who it was.  She was so shocked and surprised that she couldn't even say anything.  And if you know Mom, you know how shocking and surprising that is!  Torie hasn't wanted to let Dad or Shaun out of sight.  If Lexie and Tom were here it would be perfect.  But the whole point of giving up this year is to have so many more Christmases with Torie and that makes it all worth everything.

Yesterday we had an appointment with Dr. Chavers, Torie's Nephrologist (kidney doctor).  I pleaded and begged to go to every-other-day steroids.  I didn't have to go so far as groveling and crying, but I was fully prepared to.   She agreed, with the understanding that if Torie has protein in her urine again that we start all over.  I'm praying that I didn't just make a deal with the devil.  It seems that so much of this transplant process has been that, though.  Stop antibiotics?  Change blood pressure meds?  Hold immunizations?  Wait to transfuse blood?  All of the been-there-done-that club knows what I'm talking about.  I feel like Torie needs sleep to heal her little body and have the energy to be a 3-year-old.  Today has been such a good day.  She has played, and run, and climbed, and laughed, and even napped.   Tonight at dinner she and I were playing "Hawaiian Punch."  (We pretend to punch each other in say "Oww.")  She was laughing so hard that she couldn't catch her breath.  Oh, to have had my camera so I could post video.  We were all laughing so hard we were crying.  But behind the laughter were tears of joy to see her like that.  I gotta get that on video for you!  And honestly?  I would sell my soul to the devil if she can be healthy and happy.  So please keep those happy thoughts and prayers coming for both of us!  They are doing more than I ever believed possible, but I'm gonna save the rest of that for another post.  Thank you so much for remembering us this time of year.  We are quite overwhelmed by the outpouring of love that we are receiving for Vic-Torie! 

T+320 Winter Solstice

Happy Winter Solstice!  It's hard to believe that it's the 1st day of winter...it seems like it's been here for a while.  We celebrated with more snow, but it was the big fluffy kind.  Our big news is that Papa Dick is here!  We were going to surprise Mom, but then we feared for her health.  It might've been like Grandma getting run over by a reindeer.  We are so glad to see him!  Torie hasn't wanted to let him out of her sight, ie:  "C'mon Papa Dick, let's go eat dinner.", "Papa Dick, you in the elavator?", "Papa Dick, you have some coffee?", and so on.  And Mom and Dad haven't spent a Christmas apart in 46 years - I'm so glad they didn't have to do it this year!

T+319 More Snow!

We've gotten about 4 more inches of snow today, but it was 16 when I went out to warm up the car this morning.  16 ABOVE!  It wasn't that warm all last week...even if you added a few days together!  It was a pretty quiet weekend around the house.  Today was Clinic, and all of Torie's numbers are exactly the same as last Thursday.  Except her weight.  She's now up to 17.6 kg.  Last Thursday she was 16.7 kg.  So her Bumex dose is back up.  Her blood pressure is doing great when we can give her Enalapril on an empty stomach.  But that doesn't happen very often!  The big thing is that her urine Protein remains negative.  She is on a huge daily dose of Prednisone - 30mg.  And since it is a one-to-one solution, she takes 30ml; an ounce a day.  Anyone want to join her for a shot?  She isn't "blizzarding" as bad as she was, but nights are still rough.  We see Torie's Nephrologist, Dr. Chavers, on Wednesday.  I'm fully prepared to beg, grovel, and even cry for her Prednisone to be changed to every other day.  Wish me luck...I'm afraid I'll need it.

I had pictures to post, but I can't get them to upload.  Torie is loving her 12 days of Christmas from her Arizona family.  She's got "Lady & The Tramp" pink toenails from her 10 Disney polishes, she decorated the walls of the shower with her 7 bathtub crayons, and she's finished 4 of her 6 reindeer Pez's.  Today is Auntie Erin's birthday, and we sang to her tonight, too.  Erin is just as fantastic as her sister.  She is so busy with driving the Mom Taxi, being a great wife, and working full-time, but she always has time to think of us.  She is responsible for this blog.  She set it up for me, but she inspired me with hers.  She also, along with Heather, asked for her Mom's friends and family to donate to Torie's Medical Fund in honor of Bonnie.  We are so blessed to have both of them, and their families in our lives. 

Thank you to everyone for the cards and gifts.  We have had a few checks sent to us made out to the Ronald McDonald House to go to our rent, and our little tree has presents piled all around it.  Torie is so excited when the boxes of gifts come in the mail.  And we are so thankful for all of you who go so far out of your way to let us know that we are in your thoughts and prayers!  

T+316 A Haircut!

Today was Torie's first haircut in almost a year!  We went to the cutest, girliest salon - "Scoops".  I wish Makinley and Brielle (Torie's AZ cousins) had been there.  Torie was not so keen on getting her hair cut...she thought it would be "fuzzy like Mama Cheryl's" but she was very happy with just a trim. 

I want to share yesterday's RMH "4th day" gift...a travel mug with the Ronald McDonald House House logo.  On the other side it says:

     This is the house
     Where families meet
     To continue their lives,

                         To eat and sleep.
                         To find their strengths
                         And dry their tears,
                         To look forward with hope
                         To better years.
                         This is the house
                         That becomes their home.
                         This is the home
                         That love built.

This pretty much says it all.  Please throw your change into the Ronald McDonald House bin the next time you're at McDonald's.  And keep saving those pop tabs.  We are so blessed by the Ronald McDonald House, and the staff and volunteers that make it a home.  We are so fortunate to have made life-long friends here.  It is a place of Vic-Torie!

T+314 The 12 Days of Christmas

Torie is enjoying the 12 days of Christmas with daily gifts from the house and from her Arizona family.  Yesterday she got a Build-A-Bear from the RMH gang, and a reindeer today.  She also got a Mickey Mouse Christmas CD and window stickies from the Bower's and Beckerman's.  And there's a whole pile to go!  Today is Auntie Heather's birthday, so we sang Happy Birthday to her.  Heather is so awesome.  Besides being a busy wife and mom, she is also a Pampered Chef.  She recently did a fund-raiser for Torie's medical fund.  She constantly thinks of sweet gifts for Torie.  And she and Erin asked that in lieu of flowers for Grammy Bonnie's funeral that donations be made to Torie's fund.  She is so selfless and kind and giving and we appreciate and love her so much. 

We have been getting lots of calls wondering what Torie would like for Christmas.  She is so hard to buy clothes for - sizes depend on the cut and style.  We have to make sure things fit over her head and belly, and sleeves are a challenge because she can't straighten or raise her arms very high.  And

pants are difficult because she hasn't grown any taller.  In fact, she's an inch shorter than she was when we got here in January.  Her weight keeps going up, and she's got 7 more weeks of steroids.  We are trying to limit snacks to fruit and vegetables.  We're lucky she loves those!  She has a ton of toys and books.  She looks forward to the mail coming, and she loves to open cards.  Her medical fund is always in need of donations, and we can put checks made to Ronald McDonald House toward our rent.  But please don't feel you need to do anything!  Your concern, love, happy thoughts and prayers have gotten us so far down this road, and that's all we really need to keep going towards Vic-Torie!

T+313 Decembrrrrr!

It's cold!  The storm that came on Saturday was the 5th biggest snowfall on record - 17.2 inches.  The winds that followed it, 30 to 40 mph, caused a lot of drifting.  Last night got down to -13, and the high today was 6.  We didn't expect this weather when we got here in August!  Some of the drifts were up to the top of my tires, but thanks to Todd, Wyatt's daddy, I got dug out enough yesterday that I was able to get out after a bobcat came in to move the rest of the snow from the parking lot.  It's a good thing, too.  We had to go to "Super Grover Target" as Torie calls it, for milk and spinach.  We had to cancel OT and Speech, but we made it to Clinic.
  

Torie's urine is still negative for protein, and her serum Albumin is up to 3.7 and Total Protein is up to 6.4 - she's getting close to normal again.  Now if she (and therefore, we) could just get some sleep.  It's catching up with her.  Today she has just been so tired, but she can't sleep for more than an hour or so.  When she wakes up, she yells until we feed her.  Her weight is up.  She's already gained about 5 pounds since starting steroids.  Ugh.  But so far she's still moving, so that's better than last time. 

We got a package in the mail from our Tennessee family, The Carman's, today.  Torie was so excited to see a picture of Josiah, James, Sara,  

Hannah, and Leah.  She took the picture out of the box, said  "Awwww" and hugged it.  She also got an Abby Cadabby potty book from Rylie the other day...perfect timing.  We are getting to spend lots of time with Wyatt, Nicole, and Todd, and they will be here until after Christmas.  And we are looking forward to meeting Ethan and his family who will be here soon.  Just one more Silver Lining?  We are part of this wonderful Hurler's Family.

We still appreciated and value your friendship, love, and prayers.  Please send a few of those to my Aunt Collette and her family.  My Uncle Dick is in the hospital, and we know what a difference your happy thoughts and prayers make.  With them, we are getting closer to Vic-Torie! 

T+310 The Tsnownami

We are in the midst of a "Tsnownami"...not just Torie but the weather too!  We've gotten about a foot of blowing, drifting snow since midnight, and with wind chills, temperatures are expected to be -30 tonight.  In the meantime, the cute little red-headed blizzard continues to rage.  She's not sleeping much, and her waking hours are consumed with consuming!  Anyway, here's an update on our week...

Wednesday night our dear friends Diedre and Liam came back.  Liam has to have chemo here every three months, and he is doing great.  It was so nice to catch up with them.  Even though I haven't seen Diedre for 3 months, we are always able to pick up right where we left off.  I'm so glad we shared a shuttle ride back in January.  You can make lifelong friends in the strangest places.  Like here.  Thursday afternoon Duane and Cyndi and Michael Hansen were here, and we we able to meet them, along with Diedre, for dinner.  We cried and laughed and talked and reminisced.  They are family to us, and we loved seeing them. 

Thursday morning at Clinic we got our 3rd negative urine Protein!  Hooray!  Torie's other labs look pretty good - Albumin is up to 3.1, Total Protein came up to 5.9, and platelets are 131.  Torie's blood pressure is still up.  "Steroid-induced hypertension".  And just when she had gotten off CSA (that caused hypertension, too)!  She is now up to 4mg of Amlodipine and 5mg of Enalapril.  I think the next move will be to add Labetolol back.  I swear I heard them say that once she had no protein in her urine that we would go to every other day steroids.  Well, I guess I heard wrong.  Instead of 15mg twice a day, she's now on 30mg once a day for 4 weeks, then 30mg every other day for 4 weeks.  We're hoping to see an improvement in her mood with just having it in the morning.  We haven't seen much difference yet.  But at least we are getting somewhere!  Your happy thoughts and prayers did the trick - Thank you!  Now if you can send some more for her to be able to sleep.  Right now that's what she needs more than anything.  And so do we!  But we are hanging in, holding on, and praying for Vic-Torie!

T+306 Tomten Festival

The Tomten are the little elves in Sweden who leave presents for children and help with their chores.  Tonight the staff and a bunch of volunteers here at the house did all kinds of crafts for kids to give as gifts.  I can't give many more details, but Mommy's going to be VERY happy!  They had a bunch of different stations set up and they even had a gift-wrapping area.  It's amazing how they really do think of everything here.  For dinner, a group fixed a Swedish dinner, with Swedish meatballs and gravy, lefsa, and lutefisk.  Yes, my dear Swedish family, we ate lutefisk.  And it is delicious.  If you are a seal, or a 3 year-old on steroids.  Mom had to spit hers out, I was brave and swallowed quickly, and Torie didn't mind it a bit.  For you non-Swedes, lutefisk is the most-feared fish on the planet.  It's cod that gets soaked in lye, and then

dried.  Then before it's cooked, it has to be cleaned.  A lot.  Maybe they should use Dawn.  (It's safe for all the sea animals rescued from oil spills, right?)   Maybe a little bleach or Febreze would help with the odor - not in the room, on the fish.  My Mom remembers that my Grandpa Joe had heard about it, and bought some for my Grandma as a surprise.  The house stunk, my Grandma (the Swede) wouldn't eat it, but my Grandpa did.  I'm pretty sure it was because it was already paid for.  Anyway, it has been a family joke forever, and I highly recommend trying it!  I'm a little worried that Torie ate it.  I'm especcially worried about the furniture and our ankles.  She really will eat anything while she's on steroids!Today was a little better; Torie didn't get fired
from PT, and she did sleep for 5 hours last night.     

It's 12:30AM, we're watching Rudolph and she's eating oatmeal.  But she's quiet, and that's a bonus.  We're still waiting and praying for negatives...please keep sending them.  Prayers and happy thoughts are the only thing making a difference right now, and they're working - Thank you!

T+305 The Blizzard

Isn't she the cutest sweetest thing?  I'm glad we took this picture before she started back on the evil steroids.  The Blizzard that has settled in here isn't the weather.  Maybe her name should be changed from Torie Snow to Torie Blizzard.  We have had a rough few days, and her urine Protein from Saturday was back up to 100; Sunday's was 30.  I think Mom and I almost cried when we heard those results this morning.  We're wearing out.  Torie slept last night from from 10 until midnight, then she was up.  Eating and crying.  Crying and eating.  She finally went back to sleep about 4 o'clock and she was awake by 6.  We had an early kidney and bladder ultrasound, and we haven't gotten any results back yet.  We were in Clinic at 8:45 and then Speech and OT at 11 and 11:30.  She's so tired.  And she doesn't feel good.  And she just doesn't know what to do with her small self.  She cried and yelled for almost 6 hours straight on Saturday.  Sunday wasn't quite as bad until the middle of the night.  We can't do anything to make it better since she doesn't know what she wants.  It's heartbreaking and frustrating at the same time.  Mom got about 3 hours last night, and I got about an hour and a half.  We are trying a combination of Ativan, Clonidine, and Benadryl (For Torie, not us.  But that may be coming soon!) to try to get her some relief, but nothing is really working.  So, we keep checking daily urines for Protein, and waiting to cut back on the steroids.  Please add some extra happy thoughts and prayers for Torie to feel better, and please throw in a couple for us for strength and patience....we appreciate it so much!  In the meantime, we'll keep hanging in for Vic-Torie!

T+303 BINGO!

Thursday night here at the house is Bingo night.  I don't know how long ago Bingo night started, but I know it was going on when Rylie and Wyatt had their transplants.  We didn't go to Bingo when we were here the first half of the year, but we finally broke down and tried it.  There are tons of prizes, and everyone wins something.  Torie loves Bingo night.  I'm sure she'll start preschool and say the alphabet as A-B-I-N-G-O !

The big BINGO though is Torie's labs yesterday.  Her Albumin is up to 2.7, Total Protein is 6.0, Calcium is 8.6.  Hematology labs are almost all normal...hemoglobin is 12.9, hematocrit is 39.0, and RBC's are normal at 3.93 for the first time since January.  Her platelets are still low at 107, but that's better than 80's!  Urine Protein was negative!  Dr. Chavers, the Nephrologist, wants negatives 3 days in a row, then we can go to Prednisolone 24mg every other day for 8 weeks.  Right now Torie is on 15mg twice a day.  And is she ever feeling it.  Besides "Roid Rage", she is having mood swings and she'll just sit and cry when she's not yelling "NO" to everything.  She's having a hard time sleeping, too.  We hate steroids!  Send your prayers and happy thoughts that today and tomorrow's urines are negative so that we can cut back her dose on Monday and have our sweet Vic-Torie!

T+300 and Santa!

Santa came to Ronald McDonald House to night...Torie was speechless when he walked in!  She didn't mind sitting on his lap this year, and she asked him to bring her "a pink present and a card, and a white present for Teddie."  She even got a bag of treats from him! 

Her numbers at Clinic are all about the same.  The only thing different is that we are adding 2 more medicines - Levaquin, an antibiotic because the Prednisone makes her more immune-suppressed, and Prilosec because steroids can cause ulcers.  And to think...last week we were down to only 2 medicines!  We go back again on Friday for more labs.  Her Echo results from Monday show that her pericardial effusion is resolved, and her LVEF is up to 46%.  That's a little baby step forward!

Please send extra prayers to our friends here, especially Baby Sydney who was readmitted to the hospital today, Wyatt and his family who are on their way here, and Gracie who is battling a yucky respiratory infection.  Thanks for thinking of all of us....Vic-Torie!

T+299 Good-Bye November

Here is the last post of November...much to your relief!  Since we found out we are staying, we are bringing Christmas to our room.  Torie has also decided that she wants a potty chair...again.   We got the potty and the big girl panties, and every time she goes, she gets to put an ornament on the tree.  And she has been quite successful, considering the fact that she is also on diuretics!

Her labs yesterday were about the same - Albumin 2.1, Total Protein 5.1, and platelets down to 85.  She had a "jelly test" - an Echo -  yesterday that showed that her pericardial effusion is gone.  We haven't heard what LVEF (Left Ventricular Ejection Fraction)  is yet but I'm sure they'll let us know tomorrow at Clinic. 

 This morning I got a call at 10:40 to see if we could make it to a Nephrology (kidney) appointment at 11:00.    Have you ever tried to get 2 Grandma's and a 3 year-old ready in 5 minutes?  Yeah, that doesn't work.  But we did make it by 11:30.  The renal (still kidney!) docs feel that she is in "minimal change Nephrotic Syndrome."  They are trying to avoid a kidney biopsy at this point.  Not only is she imunosuppressed with low platelets, but she is also a white redhead.  For those of you not "In the know", redheads bleed.  Really.  Ask an Labor-and-Delivery nurse (Erin!).  Of course, the standard of treatment is steroids.  So Torie is back on Prednisone (the steroid from hell).  A 12-week course.  Just like we did in May.  We stocked up on spinach, asparagus, and strawberries this afternoon.  Hopefully she won't pack on as many pounds as she did the last time!



Once again, I have to stop and remind myself how fortunate we are.  Torie is in the best place for treatment that she could be.  My Husband and my Dad are taking care of EVERYTHING at home.  Lexie is working 2 jobs so that she can make a home for herself and Torie when we get back.  Shaun is only a phone call away.  Heather and Erin and their families are right by our sides.  My Mom is my best friend and constant companion.  We have all of you who read this and leave your comments to brighten our spirits.  We are so blessed and grateful.  Every day truly is a gift.  Thanks for following us for so long and for giving us your support.  You are appreciated and loved as we keep reaching for Vic-Torie!

T+296 Black Friday

We did our Day-after-Thanksgiving shopping at the UofM hospital...first a CT, then labwork at Clinic!  I don't think we got any good sale prices, though.  Torie's head CT was fine - what a relief.  Her labs are basically unchanged; Albumin was 2.3, and Total Protein was 5.5.  Her urine Protein to Creatnine ratio was 29.0.  Normal is 0-0.2.  So, she is officially back in Nephrotic Syndrome.  Monday we have another Echo, and we'll try to get in with Nephrology some time next week.  I have a feeling that they'll want to do a kidney biopsy since she was only in remission for 3 months after stopping steroids.  She's still feeling pretty good, and eating some.  We'll just keep taking one day at a time until we figure out this Mys-Torie!

T+294 Giving Thanks

 Happy Thanksgiving to all!  Here at the house they pulled out all the stops...the cooking started last night and continued through the day.  They roasted 16 turkeys - all the ovens in all the kitchens were in use.  And dinner was delicious!  One more silver lining:  we didn't have to cook or clean up!



Thanksgiving last year was so different.  We were at home, with our family, but everything with Torie was so unsure.  We were preparing to start this journey through transplant, and we were so scared.

This year we have so much to be thankful for.  Torie is still with us.  She's still fighting, and still so tough.  Tom and my Dad and Shaun have held things down while we are here.  Lexie is so brave, and she is handling being away from her baby girl as well as she can.  My family, especially my Aunts Karen and Collette, and Heather and Erin, have been unbelievably supportive.  We have friends that send prayers and good wishes and happy 

 thoughts daily.  I can't imagine how people can go through this without all the support that we are blessed with.

We are thankful for the family that we have here at Ronald McDonald House; and we are fortunate to have our Hurler's family - The Carman's, The Hays', and the Blancheri's, to mention a few.  We are grateful for the friends we have made while we've been here. 

We wish you all a Thanksgiving as blessed as ours is.  Thank you for all you do.  And thanks for keeping the prayers and happy thoughts coming for Vic-Torie!