What a year 2009 has been...lots of good, some not so good. While we received such devastating news about our sweet Torie, we are going into 2010 with a plan to do everything we can to keep her with us for many more years. Torie and Mom and I leave in the morning to head to Minneapolis to the University of Minnesota to begin transplant. This is absolutely the most frightening challenge I have ever faced. My only resolution for the new year is to attempt to face this challenge with all the good-natured grace that Torie has. Please keep us in your thoughts and prayers for success with transplant and as few complications as possible. My wish for your New Year is to receive as much love, friendship, support and well-wishes as my family and I have had this year. Happy New Year! May all of our dreams come true!

"Wimmy Poo"

You may be thinking this blog is about Winnie the Pooh. It's not. "Wimmy Poo" is Torie-speak for swimming pool. About once a day we hear about "Torie go wimmy poo with Stacey. Jump in the water!" The thing is, she went to the pool with Stacey (and I) ONCE! In AUGUST! She talks about it like it was yesterday. And every time she saw a pool she said "Stacey". For a while I thought maybe she was thinking Stacey lived there. Torie hasn't been able to go swimming because of that stupid, miserable, cursed line. But since her line's out, she was in! Torie, Lexie Stacey, and I went to the Orchard Mesa pool today. As soon as she saw the pool she started squealing and giggling and squirming like a puppy. She couldn't wait to get in. And she couldn't get her clothes off fast enough.

A while ago, Lexie told her "3 more bites" when she said she was done eating. Now when Torie wants more time she says "3 more." So today, shivering with blue lips, we told her it was time to go. She said "No, 3 more!" She swam, and splashed and jumped and had a great time. When we finally got her out she told me "Mama Torie wet!" I guess that's a good way to be when you've been swimming. What a fun day. And Stace...thanks for the plan! Excellent idea!

Merry Christmas

I want to share the card that we got from The B & B's (The Bower's and The Beckerman's... Heather and Erin's families). A perfect sentiment for us this year...
It's a time to slow down, let go, help those who need it. Love them, too....
And maybe that's the way we find our peace and joy, not by taking on the whole world all at
once, but just the part that fits in our hand.
Although I love to feel sorry for myself, I am so grateful for the gifts that we have received this year. Friendship, caring, thoughtfulness, kindness, and hope are just a few of these. We have learned how important it is to treasure every day with those you love and those that love you. To all of you who mean so much to us, remember at Christmas and all through the year how much we appreciate and value you! We wish the very best to you and your families....Merry Christmas!

'Twas the Night Before Christmas...

Dinner is over, the presents are unwrapped. The best gift was watching Torie. This is the 1st Christmas that she is really old enough to enjoy everything. And boy, did she enjoy EVERYTHING! It was a small gathering this year; Tom is working and Shaun couldn't make it because of the weather :( but they were with us in spirit!

"Merry Christmas Uncle Shaun!" (I think I may have to give up my dream of her future acting career. Perhaps she was working on timing, delivery, facial expressions, etc. though!)

I think Torie's favorite gifts were her camera, her stick pony, and "money" from her Auntie's Heather and Erin and their families. She even helped the rest of us open our presents. Our best gift is Torie being approved for BMT though. The gift that truly does keep on giving.

Little CindyLou Who who was no more than 2!

I was watching " 'Twas the Night Before Christmas" earlier today. The one with the mice and the clock. There's a song that seems very appropriate this year as I think about Torie's upcoming battle and all of your prayers, thoughts, blessings, and wishes...

"You wait, and I'll worry, You pray, and I'll plan. We'll do what's necessary, 'cause even a miracle needs a hand."

Chopsticks!

Tom and I picked Torie up today to babysit while Lexie is at work. We went to the mall and saw Santa, and did a little last minute shopping. Torie and Tom were hungry so we got food court Chinese. She's always seen Tom and Lexie and me eat with chopsticks. Today she picked mine up and just did it!

Who says Hurler kids have problems using their hands? I guess Torie didn't listen!

Happy Auntie's

This is the birthday week for Auntie Heather and Auntie Erin. They are so far away and we never get to see them enough. They have both been so supportive of Torie and of us as we are going through this new chapter in our lives. In fact, if it wasn't for them we wouldn't even have this blog!

Bye-Bye Line

It's gone. Out. All done. Bye-bye. This morning I bid farewell to my constant nemesis for the past 3 months. I went over to Mom & Dad's this morning to change Torie's line dressing and her line was about 2 centimeters farther out. We called Dr. Mike and Teresa and they both felt we've babied it and milked it for all it was worth. Dr. Orchard and Teresa feel that since Torie has had 12 doses of enzyme that we can wait to have it replaced when we get to Minneapolis. And Torie gets a 2-week Christmas vacation. Hooray! A real bath for Christmas!

APPROVED!

Tuesday the 15th was a big day. Torie got her 12th dose of IV enzyme, and of course, she had no problems with it. The only problem she had that day was Stacey Schmitt coming to visit her. She wasn't able to stay as long as Torie would've liked, and when she left Torie was mad. She said, "Stacey go playroom and Torie not go." Then Dr. Mike came in to look at her line (which he feels is still good) and he left. Torie was mad again. "Dr. Mike go playroom with Stacey." I guess she thought they were playing with the car and the kitchen. Her labs all look great and her H&H are going up.

We also found out that she has been approved for transplant. The case manager for United HealthCare has dealt with one Hurler's patient before, so she knew right away that BMT is the only treatment for these kiddos. She is scheduled to start pre-transplant evaluation on January 4th. We'll leave on New Year's Day and head to the frozen north. When I get our schedule, I'll update more. Even after all the time and energy that we've put into making this happen, It's so super-scary. I just hope we're doing the right thing. Well, I hope doing the right thing works.


Tuesday was also Heather's birthday, and due to technical errors, I'm late posting this picture. But anyway, Happy Birthday Auntie Heather!

After much discussion, we have decided to wait to go to Minnesota until after the holidays. Of course, it wasn't totally up to us; we are still waiting for insurance authorization. Even if they were to approve Torie's transplant tomorrow, the earliest we could start pre-transplant work-up would be Wednesday, and that's if they were able to schedule all gazillion docs in that short time. We are now woking on starting January 4th. Mom and Torie and I will leave here New Year's Day. Hopefully Mother Nature has gotten a few storms out of her system by then!

ERT #11

Today was Torie's 11th dose of IV enzyme, and guess what? She did fine! I know, I know. Big surprise. After all these doses it's getting hard to come up with something new. Labs were better, though. Her CRP and CBC are normal. Sed Rate is only up a little, and her Hemoglobin and Hematocrit are up to 10 and 30. Last Friday her line came unsutured. We got a quick X-Ray and her line is still in good position in the right atrium. I used about a half of a roll of tape and we're hoping it stays put. This line is the bane of my existance!

We are still waiting to see if we go to Minnesota this week. The PetCo HR (Human Resources) person who is handling Lexie's benefits never got Torie added with United Healthcare last week. So we're in the same place we were last week. LIMBO! Beth, the financial office goddess at U of MN, has been doing everything she can to line up case managers for authorization, but until PetCo gets Torie added, she can't do much else. Like the song says, "The waiting is the hardest part."

Catching Up

Please forgive my blogging tardiness! Monday Torie, Lexie, Mom and I went to the Stuff-Your-Own-Bear at the mall. Commander McGuire from the VFW gave Torie a gift certificate to make something cuddly to take to Minnesota. She saw the Snowman and it was a done deal. She stuffed it and made a wish on a star to sew up in it. She had a great time brushing it and picking out clothes to put on it. She was so much fun to watch! When her Snowman was dressed she went to see Santa. She didn't want to get too close but she was fine sitting on the arm of his couch. Maybe next year she'll warm up to him!

Tuesday was ERT #10, and, as usual, went great. She has had no problems tolerating enzyme. And she has had no problems with any of the antibiotics she's been on. It gives me such great hope that she'll tolerate chemo and transplant as well. She's one tough cookie, and she smiles and laughs and plays through it all.

Torie is no longer able to be on Scott's insurance, so Lexie put her on her's. Unfortunately, we now have to have a new case manager to give pre-authorization for transplant work-up and for the actual transplant. So Minnesota backed us off for 1 week while we start over. Hopefully it won't be longer than that. The new plan is to leave next Friday, the 11th and start work-up on the 14th. Exactly 3 months since we were there in September. It is stressful to watch more days go by. It's really stressful on Lexie. She had gotten use to the idea of saying bye, now she has to get use to it again. But we have to look at the silver lining...more time with family and friends, and more time to enjoy the warm weather. (Relative to Minnesota!)

I've gotten lots of requests to post where donations can be made to..so here it is. It's also on the sidebar. We are so appreciative and overwhelmed by the generousity that has been given to help Torie. "Thank you" just doesn't cover it, but Thank You!
Torie Brady Medical Fund, Grand Valley National Bank, 452 S. Maple St.,
Fruita, CO 81521