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

Up and Running

Torie's blood culture was negative at 24 hours yesterday. She was up and in the playroom first thing "ooking dinna" at the playkitchen. She ended up being the only patient on the unit so she had the whole hall to run. She hasn't had a fever since Friday night, so this morning Dr. Mike let her go home! Hooray! We're hoping she just picked up some little holiday-gathering bug and that her line culture stays negative. She finishes antibiotics on Tuesday, so hopefully that line is clear and good to go to Minnesota. Uncle Shaun went back to Fort Collins this morning. We didn't expect for him to have go to the hospital again to spend time with Torie. If all goes according to plan, we will spend Friday night at his house on our trip north. Please send those thoughts and prayers Torie's way...we are so ready to get started so we can get done!

We had a great Thanksgiving! I have so much to be thankful for...family, friends, and the ever-entertaining Tor-nado. She was fine at dinner Thursday evening; asking Uncle Shaun for "mo butta pease". That's Grandma's girl! Today she started running a fever so she went up to Peds for another blood culture. CRP and Sed Rate are both up so she's now an overnight guest getting Vancomycin again, as well as Rifampin. And they added Fortaz (another antibiotic) until the blood culture comes back. We have our fingers crossed that she just picked up a "bug" and that it's not another line infection. Hopefully this won't change going to Minnesota. We are also hoping to keep her central line at least until we get there and she can have a new one placed if we need to. Please keep your thoughts and prayers with her.

We hope you and your families had a wonderful Thanksgiving and are remembering how important you are to us. We appreciate you and are most thankful for you!

ERT #9

Yesterday was Torie's ninth dose of IV enzyme. Her lab work looks great...infection markers (CRP, Sed Rate) are all in normal limits. She is no longer on Rifampin, the antibiotic she was taking to prevent endocarditis, and she only has 1 more week to go on the Nafcillin. She takes everything in stride. When her antibiotic is hooked up she just tucks it in a pocket. And if she doesn't have a pocket, she puts it in her pants! Whatever works!

We heard from Minnesota today...Torie is set to go. Finally. We will leave here Friday, December 4th and get to Minneapolis on Sunday. She will start pre-transplant evaluations on Monday the 7th. These evals will be like the ones she had in September, and some of them will even be with the same doctors. It is so scary to think about all she has to go through, but the sooner she gets started the sooner she will be able to make the enzyme on her own. Well, with the help of her new cells!

ERT #8

Once again Torie did excellent with her IV enzyme infusion. Dose #8 is done. Her blood cultures have been negative since November 9th and Dr. Mike changed her antibiotic to Nafcillin. A lot less nasty than Vanco! We still have lots of doses to go...3 weeks from the last negative blood culture. So about December 1st. Her H&H are up to 10 and 30, and will hopefully continue to go up since we're not doing as many lab draws. It's nice to see her with a bit of color back in her cheeks. Every day we're hoping to get the call from Minnesota that it's time to go back and start stem cell transplant. It feels like the clock is ticking and we're doing nothing. Torie needs 10 to 12 doses of IV enzyme before transplant. Tuesday the 24th will be #9. She will get her weekly infusions while in Minnesota. What are we waiting for? The transplant protocol had some minor changes made to it. Any time there are changes in something like this, it has to go to Internal Review Board (IRB) and be approved. And so we wait. Please continue to keep us in your thoughts and prayers...at least for the phone to ring!

Chili for Torie

Today was the Chili for Torie fundraiser. Amazing the amount of generosity that has been shown to us. I don't have an official amount that was donated, but it's around $2500.00. Amazing. The support that we have been shown is even more unbelievable. There was a ton of chili entered and they were all delicious. First place was taken by my BFF Heather and then she turned around and donated her prize to Torie's fund. This whole thing was orchestrated by Stacie Schreiner (beautifully, I might add!) with help from so many of my other dear friends. JoAnn Ryan arranged for the VFW post to host this event and it was so appreciated. Torie was a little shy when she first got there and a little overwhelmed by so many people who were there to see her. But in typical fashion she warmed up quickly, especially when she saw Nick, Stacie, and her buddy Stacey Schmitt. She ran and played and ate a ton of chili. I think she tried all of them too.

When we learned that we would be going to Denver for weekly enzyme infusion, Tom asked me if we needed to move back to Denver. I quickly said no. The Grand Valley is our home and we have so much support here. This community, and the community of friends we have here, are giving and caring. A man walked into the VFW today, donated $50.00 and left. A family with a child who had stem cell transplant at 26 days of age came to lend their support and to let us know that if we needed help with fundraisers or just to talk to someone who has been through what we facing that they are there for that. Torie has rough times ahead. I can't imagine how hard it is going to be to watch her go through them. But I know that when we have bad days, I can look back at today and remember how many people care and are here for us. I thank you from the bottom of my heart for all that you do and for all that you are.

News of the Day

Torie was interviewed by Channel 11 News today to raise community awareness about Hurler's and the Chili for Torie Cook-off this weekend. It went really well, and Torie was - Surprise! - charming and sweet. We owe a huge Thank You to Lexie's friend Alex for setting this in motion, and to our dear friend Ken for all his follow-up work. To see the interview, click on the link at the right.

Oh So Pretty!

Our amazing, talented friend Stacie took fall pictures today. I can't wait to see them! These are some I took as a preview. The handsome guy is Torie's boyfriend Nick (and Stacie's sweet son). Cute couple, huh? I picked Torie up from the Great's house and before we left she said "Papa Torie pitty girl!" And who could disagree?

ERT #7!

Today Torie got her seventh dose of IV Enzyme...at St. Mary's! I got a text from Shaun this morning "Glad I don't get to see u today :)" So were we. Well, we do miss seeing him every week. That was the best thing about going to Denver. (Not to mention big malls!) I got gas Saturday morning and when I got home today I was just below full. 26 miles roundtrip. No suitcases to pack and only 2 diapers! Nice. ERT went great again. Her labs look good. I've been drawing daily blood cultures and they've been negative for the last couple of days. So Dr. Mike decided no more daily labs. Hooray! Lexie was able to be at the hospital for a little bit before work today. She's only been at the very first one in Minnesota and she was very proud of how well Torie does. We're still waiting to hear from Minnesota for a transplant date but hopefully soon. I can't tell you how grateful I am to everyone who made it possible for us to stay here for treatment. And I'm so glad for Torie to be able to be with the most excellent Peds nurses ever!

ERT #6

As usual for Torie, she tolerated her 6th dose of enzyme with no problems! Her labs looked great...CRP (measure of infection) was 0.2, and hemoglobin and hematocrit were up to 10 and 30. Hooray! Best news of all, her enzyme is set to go in Grand Junction at St. Mary's for next week. One of my best buddies, Stacie Schreiner, has been working tirelessly to help set this up. And a huge THANK YOU to Sheri Campbell and Kathy Richardson for all their help and support also. Just think..a 20 minute drive, ERT, another 20 minutes home...all in one day! I'm so excited to be able to put my suitcase away. For awhile anyway; hopefully we'll be packing for Minnesota soon. The highlight of this last trip to Denver was finally meeting Rylie and her mom Jade! I've followed Rylie's blog ( http://RylieHays.blogspot.com ) since Torie was diagnosed with Hurler's Syndrome. Rylie is also a super cute 3 year old with Hurler's who's journey has given us a good idea of what we're facing in the future. Her family blogs all her ups and downs through this and were the source of inspiration for this blog. Torie and her Hurler sister (we're all part of this Hurler family now!) Rylie played on slides and had dinner, danced, and Rylie even read Torie her Elmo book. And she gave Torie a sticker book that she reads and calls her "Ry-ie book". Although it's horrible for anyone to have this diagnosis, it's so nice to meet others and know we're not alone. We are looking forward to seeing Rylie and Jade again as soon as we can.


And now the bad news...We had just left Glenwood Springs yesterday when Dr. Gallegher from the Metobolic Clinic at TCH called. With the other labs that were drawn, we also had a blood culture to see if the infection that made Torie so sick before was still there since we finished antibiotics on Saturday. The blood culture was positive again. After talking to Dr.Mike, we went to St. Mary's to the Peds unit to see what we should do. Torie is now back on Vancomycin for the infection, and Rifampin to prevent endocarditis. At least we are able to do this at home and Torie didn't have to spend the night. The plan is 3 weeks of antibiotics and hopefully we can keep her central line. So I'll be drawing daily blood cultures (there goes her H&H!) and delivering them to the hospital. But we're all in our own beds and not facing bad weather over the passes!

Torie loved Halloween! She got out of the bathtub tonight and told Lexie she wanted to put on her monkey suit and trick-or-treat. It's so hard to wait a whole year for some things. Tomorrow we head over to Denver for ERT#6. The weather looks like it should cooperate and hopefully we will finally get to meet Rylie!

Monkeying Around

We made it back from Denver Tuesday night, and I'm sure glad we left when we did. As much as I was hoping to not go back for awhile, we have one more trip next week, then hopefully Torie can get her enzyme at St. Mary's. In the meantime, we had a follow-up with Dr. Mike yesterdayand Torie got the H1N1 vaccine as well as the second half of her flu vaccine. She wasn't happy about "poke inna yeg" but she faced it with her usual bravery and did great. I wish I had a quarter of her toughness! Today we went to Banana's Fun Park for a bit of Trick-or-Treating.. Where else would a monkey go? Unfortunately there were just a bunch of bump & jumps and I'm not comfortable with her being in those. Hurler kids are at risk for spinal compression fractures because of their skeletal structure. Even more unfortunately these fractures tend to be high up in the cervical area (C1-2) and the result is quadriplegia. So no somersaults, gymnastics, trampolines, etc. But she is really getting into this candy hand-out program..."mo canny pease!"

ERT #5!

Here we are in Denver at The Children's Hospital. Torie's enzyme is infusing with no problems and her labs are looking great...CRP is down to 1.2! Hooray! Somehow though her platelet (the part of bllod responsible for clotting) count is up to 915. Normal is 150-400. We've been having problems with her line flushing sluggishly and no blood return. Torie's infusion nurse today is Melissa and she just put a dab of TPA (a really strong clot-buster) in her line to see if we can get it working better. She is still getting the Vancomycin and the home care company is going to deliver the remainder of her doses today. Uncle Shaun came again to spend the day and he's always lots of fun. Our plan was to stay at the Baxter Inn (Collette and Dick's) tonight, but there is a big storm heading this way. We're going to leave as soon as infusion is finished to try to make it back over the mountains before it hits. Although the thought of enzyme infusion at St. Mary's is super exciting, we'll certainly miss seeing Collette, Dick, and most of all Shaun, every week. Good news...Melissa just came in to check her line...flushes easy, great blood return...Halleluia! Anyway, that's about it. Cross your finger that the storm holds off for a few hours!

Torie and her Greatest Uncle Shaun...kickin' back!

Over The Mountain

Again. Hopefully this trip doesn't last as long as the last one. Torie is doing great with her Vanco. Lexie is just getting over H1N1, so Torie has been at the Greats since Thursday so I could work a couple shifts this weekend. Mom has turned into quite the nurse. My job may be threatened! Torie is walking more and she's getting some color back. We are crossing our fingers that this may be our last infusion in Denver. Janelle from TCH and Kristina from Genzyme are working with St. Mary's so Torie can get her enzyme here! Hooray! Only about a 15 mile drive...we won't know what to do with all our time. Maybe put the suitcase away for a while. The Peds nurses here are great...certainly on par with Children's in Denver, and with Children's of Central California where I worked last year. And besides having excellent skills and knowledge, they are so supportive and doing so much to help us through this time. I went to work the other night to find a huge bag of pop tops. And Stacie and my BFF Heather are setting up a chili cook-off fundraiser for Torie. We are having a lot of insurance concerns right now and their efforts are so appreciated. If I were ever to put a dollar amount on my friends and family, I am rich, rich, rich!

Back Home

We got back home yesterday with Torie and a huge box of IV antibiotics that she'll be on for the next 10 days. Fortunately the weather cooperated and we had clear roads all the way. It's amazing how many wagon loads can be accumulated in just a week. Was that all it was? Seems like much longer. Anyway, when we got home Torie walked! Very weak and wobbly, but walking all the same. She spent the night with Tom and I so we could do her Vanco and because Lexie had to work late. Torie went to bed by 9:00 and didn't wake up till 9:00 this morning. I think she just enjoyed no blood pressures, temps, or other interruptions. I took her over to the Greats house and she finally had a Grandpa breakfast...a fried egg and sausage...and she scarfed the whole thing! With "wobby milk" (Torie-speak: Strawberry milk). It's so nice to have her back to her old self, running, playing, laughing, and jabbering. We just want her healthy to go back to Minnesota for transplant!

IV ERT #4

Last night Torie got her 4th dose of enzyme and did great as usual. She hasn't had a fever since Monday night. This morning her CRP is down to 2.5. The blood culture from the 17th is growing very mild Staph so they are just going to extend her antibiotic coverage (Vancomycin) for one extra day. But the best news is that she still gets to go home today. As I post I am waiting for her Vanco to be delivered so we can give it at home. Mom and Dad are cleaning their room at Ronald McDonald House and I'll go pick Tom up at the hotel as soon as her Vanco gets here. Then all we have to do is pack up and head back over the mountain! I'm glad we were here when Torie got sick, but I'm so glad to be going home, and so is Torie. Again, I don't know how people deal with with the problems chronic kids come with alone. It makes such a difference that Mom, Dad, Shaun, and Tom were here. We were able to take turns at Torie's bedside so none of us were exhausted and Torie was never alone. Thank you for keeping up with us. I have no doubt that your thoughts and prayers have played a huge part in Torie's rapid recovery.

Home Soon!

Torie had a great night...slept well and no fevers. Her blood cultures from the 17th are now negative at 72 hours, and there has been no growth in the ones from the 18th and the 19th. Her CRP today is 3.3; almost back to normal. The doctors just finished rounds and they are going to try to discharge her this evening! WooHoo! She will continue on antibiotics for 2 weeks, but we can do that at Ronald McDonald House. Today is supposed to be ERT day, but we don't know if they'll give it today or tomorrow. She just took a bath and stood at the side of the tub for a minute or two. And just so you know she's back to her smart self...while she was in the tub I asked her if she wanted to put on hospital jammies or her own clothes. She looked at me like I'm a crackhead and said, "I'm in the tub." Silly Grandma. Who puts their clothes on in the tub?

Torie put her beads from this ordeal on her necklace this morning. The Children's Cancer Research Fund has a program called Beads of Courage. Kids are rewarded with beads for oes different procedures, hospital nights, clinic visits, etc. The Child Life therapists at the University of Minnesota started her beads when we were there and Denver Children's Hospital has the same program. It's pretty cool. And it's not just for kids with cancer but for kids with other chronic illnesses that require multiple procedures. Allison from Child Life gave me information on starting up this program, so hopefully we can do this at St. Mary's. Okay. That's all for now. I'll post again this evening and let you know where we are!

And Better Yet!

Torie has had a really good day! This morning her CRP was down to 5.0...excellent. All of her other labs are looking great as well. The best news of the day was hearing that her blood culture from the 17th is negative at 48 hours. Hooray! She's eating better and drinking a little more. She's also off oxygen now. She still doesn't want to walk or even stand up for more than a couple of seconds so Physical Therapy (PT) is going to start working with her. Lexie and Scott had to go home to Grand Junction today but Mom, Dad, and Tom are still here. Dad and Tom will probably head home Wednesday and Mom and I will stay until she's ready to go home. At least I'm back on night shift.

We're are hoping Torie can get her 4th dose of enzyme tomorrow so please keep her in your thoughts and prayers. And if you can include Bonnie, Auntie Heather and Auntie Erin's mom (and Tom's first wife), in those prayers also we'd be grateful. She's in the hospital in Arizona and we're hoping for a quick recovery for her. Thank you again...you are appreciated!

Still Catching Up...

Lexie and Scott arrived last night and unfortunately Torie was really tired and cranky so she didn't give them a very warm welcome. But she slept so good last night that this morning she was super excited to have them here! She's eating a little more, talking a little more, and smiling a lot more. Hooray! So maybe now I can think a little more clearly and tell you some more stuff that's been going on. Thursday night Collette and my cousin Fachon came to visit Torie and brought her the cutest puppy puppet. Collette was playing with the puppet with Torie and she laughed! Mom and I cried just hearing her laugh again. I can't thank Collette and Fachon enough for that.

Yesterday she had a tea party on the floor and that was lots of fun too. She poured water back and forth from her teapot to the cup and stirred and got water all over herself and the floor! All in all, better!

Torie's napping now. She has been more awake, more alert, and more talkative today. It's so nice to see our girl coming back to us. She even ate a little bit. Docs are increasing her Vanco to as much as they can and adding another antibiotic, Gentamycin, to cover the possibility of endocarditis that didn't show up on the echocardiogram. Yesterday was probably the roughest. She was so uncomfortable. She was acting like she hurt everywhere and cried when we touched her. I think all the antibiotics were working and the bacteria was releasing endotoxins. (Those are the nasty things that make your joints and muscles ache when you are sick.) It started during the night and even though we have been giving her gallons of Tylenol and Motrin, it just wasn't cutting it. My heart was breaking that I couldn't do anything for her. In what was not one of my finer moments, I barged into the doctors rounds and demanded that they give her IV morphine. I hadn't slept all night and I was crying. I must have been frightening. Anyway, she finally got some morphine and it did its magic. Within an hour she was sitting up eating sausage with Great Papa and even talking a little. I can take humiliation if this is the result. She had a much better night. Mom had night shift last night. Tom and I left, got dinner, and I was out. I don't know if I even rolled over! But my darling husband said that he did check for a pulse. Isn't he thoughtful? When we got here this morning Torie was sitting up, playing with Play-Doh, and said "Hi Mama! Hi Papa Tom!" when we walked in. She shared some of my lunch - a pickle and chili fritos - and told Dad "Papa I feel better." Whew. I wish I could tell you how relieved we are. I send my thanks and my deepest appreciation for your thoughts and prayers. I know that these are a playing a big part in her recovery. She still has a long road, so please keep up what you're doing!

What day is it?

I'm not sure but someone told me it's Saturday now. We are at Children's Hospital and we've been here since Wednesday morning. Torie has MRSA (Methacillin Resistant Staph Aureus) both in her line and in her blood. This is called bacteremia or sespis. Pretty much one of the worst infections you can get. She's a couple of different antibiotics, Vancomycin and Rifampin. One of the biggest worries right now is that the infection will settle in the valves of her heart. Hurler kids can have lots of problems with valves anyway so they are keeping a close eye her. Her blood cultures were growing Staph at about 12 hours. When they grow that quickly, the infection is fairly aggresive. We spent Wednesday in the ER and got to her room about 5:30 in the evening. What a scary sick cookie she was that day. They even moved her to a resuscitation room in the ER and for a while I was thinking that she may need that. SO SO Sick. After IV fluid she tolerated the Vanco(mycin) without any problems. She has been so lethargic. And pretty high fevers...39.7C/103.5F...that only go down with both Tylenol AND Motrin. And they come back pretty quickly after that. She has had an echocardiogram of her heart to see if she has any increased valve problems and we are waiting for those results. The Rifampin was started just in case she does. As a side note, Rifampin turns body fluids orange. Not just a little peach tint - Orange! Pretty cool party trick, huh? Anyway. They checked the blood culture results to see what the MRSA was sensitive to, and Vanco will work. Now they just have to find the right dose, so they are checking her Vanco levels about every third dose. She has had a few chest X-rays and so far they look pretty good. One of our biggest concerns is whether or not she'll be able to keep her line. Our hope is that infusing the Vanco through the line will get rid of any infection that is "clinging" to the line. If we lose her line she'll have to be poked for IV's for antibiotics and for her enzyme. And she has been so hard to find veins on. The other option is to have a new line placed but that means surgery and the breathing tube was so hard to get in that we're nervous about that. So cross your fingers for the antibiotics doing the job. Torie will have at least 14 days of antibiotics so we're here for a while. I'm waiting for Docs to round so I'll update more soon.

IV ERT #4...NOT!

Torie woke up this morning with that same darn fever..101.8F/38.7C. Her enzyme infusion was cancelled but I was concerned about a fever in a kid with a central line. Infection is a huge risk with these. Just our luck, Dr. Thomas is out of town and Janelle doesn't work on Tuesdays. After a quick chat with Teresa at the BMT (Blood and Marrow Transplant) clinic in Minnesota, we went to the ER at Denver Children's Hospital. They gave her some IV fluid, and did some lab work. One test was blood cultures to check for septicemia - a blood infection. They also did a CRP (C-reactive Protein). This is a blood test that rises with acute inflamation, such as an infection. Her CRP was quite elevated at 22.0. We were able to get discharged from the ER and come back to Shaun's. She's so puny though. Floppy and lethargic. She doesn't feel like eating or drinking. So basically the same as last night without the barf. Blood cultures are resulted at 24 and 48 hours, so we're just holding our breath and praying they'll be negative. So no ERT this week. Hopefully she'll be back to her bright-eyed and bushy-tailed self soon. We'll be watching her close and we are grateful for your thoughts. Send lots of good ones her way!

Over and Out

Another trip to Denver. On today's voyage it was Mom, Dad, Torie and I. Poor Torie. She was super fussy when we picked her up; just not herself. Right before Palisade she barfed. And barfed. We stopped at the Fruit Stand, changed clothes, cleaned out the carseat, and continued on. Unfortunately, she kept it up all the way to Shaun's but she got a quick bath, some clean jammies, and the rocker with "Great Mama" as soon as we got here. And of course, if it's not one thing it's another, Shaun's washer is broken. So we bagged up the mess and went to the laundromat. What a fun trip already! Torie woke up this evening with a fever but after some Tylenol she ate 2 crackers and said about 5 words. For those of you who know Torie, you know this means sick! She normally talks a blue streak and will eat anything. Except for raw onions.

We're hoping for a new girl in the morning. If she still has a fever and is puny, we'll probably have to skip this week's ERT. And we don't want to do that...we need every one. So please keep Torie in your thought and prayers for a fever-free morning!

A Party!

This evening we had a "party" with one of my best friends, Todd, and Mom, Torie and I. Todd hadn't seen Torie in ages, and with Jerry out of town and Tom at work, we decided to get together so Todd could get re-aquainted with Torie. Of course they were both at their charming best! Torie and the Greats (Mom and Dad) were having a sleep-over and Mom and Torie arrived for "a paaaty." Mom and I got Todd updated on Torie. Lots of stuff that we talk about but that I haven't posted. Rylie's mom Jade commented on "noisy breathing" and I realized I haven't put much in this blog about that. Torie has ALWAYS been a "noisy breather", especially when she's asleep. We got so used to her purring. Very rhythmic, and kinda nice to sleep to. She is now a quiet sleeper...after ERT and ear tubes. We've also noticed her speech is much clearer and she seems to have more words that we can understand. One of the characteristics of Hurler's is chronic ear infections. Torie has never had one but we learned that she did have some hearing loss at lower tones that was probably due to fluid in the middle ear. So her improved speech could be due to hearing better. Hopefully we won't have to have multiple sets of tubes as some kids do. She continues to learn sign language easily, and surprises us every day with what she can say and do. She's so amazing, and I'm glad that you continue to follow us on this journey!

IV ERT # 3

Sorry I'm late in posting this...there's a reason people my age shouldn't have two-year-olds...They wear you out! We got back from Denver yesterday afternoon. The drive wasn't as pretty as the last couple of times but it was dry. I know we'll get into some weather on at least one of our trips so it seems lucky when the roads are good. Torie had her third dose of IV enzyme Tuesday and once again tolerated it without problems. This time her infusion was ready and running by 9:15...way to go Kristin! Shaun came and spent the day with us again..we are so lucky to have him. He's not only great support for Torie, but for the rest of us also.

We have found that not only is Torie allergic to the adhesive remover, she's also allergic to the ChloraPrep that we use to clean her central line site :( More itching and hives...poor babe. But she's so sweet that it just doesn't seem to bother her much. She's got more important things!

We're actually looking forward to next week, strange as that sounds. Uncle Shaun's birthday is Wednesday; Mom, Dad, and I are going over, and we're finally going to meet Rylie, another Hurler girly here in Colorado. Maybe this doesn't sound like much, but we have to look at little things along the way. Besides, Torie loves singing Happy Birthday and meeting new friends!

A Day at the Zoo

Torie has her IV ERT tomorrow, so for some fun we went to the Denver Zoo. We saw elephants get a bath, sea lions "jump in swim pool!", and lots of monkeys. She loves animals so this was right up her alley. The weather was great for most of our day, but we got some rain this afternoon. We went to Tropical Discovery, saw snakes, and alligators, and Komodo dragons, and by the time we came out so had the sun! Colorado weather. If you don't like it, wait 15 minutes and it'll change. After we left the zoo we went to Pete's Gyro Place...our fave for Greek food. Torie loved the feta, the souvlaki, and the pitas. So did we! Here's some pictures from our day...

And what kind of snack do you have at the zoo? Animal Crackers, of course!

Here's our bedtime story...Torie was soooo tired after our hugely fun day and she missed her nap. After a bath, some stories and a cookie, she got tucked in. Tom and I were tiptoe-ing around and we thought she was asleep. Tom sneezed and we heard, "Bless you Papa Tom." I'm still giggling about it. But a nice way to go to bed, don't you think?

First Impressions

Torie and Tom and I got into Denver yesterday afternoon and stopped at Jamie and Joe's house. Jamie has been one of my best friends for like 30 years now and Joe is her fiance. Knowing how I run my mouth, they've heard a ton about Torie, but they've never met her. Torie tends to be a little shy around new people, but once she warms up, watch out! The best way for her to warmup is an animal. So after she gave Bella a few doggie cookies, she was ready to go. They gave her a super cute stuffed pig, and a bag with the most fun tissue paper ever. By the time we left she was saying "Bye Jamie. Bye Joe." But after we left she kept saying it all the way down the street. Then she finished the milk Jamie had put in her cup and said "Back Jamie's. Mo milk." We checked into our hotel room and Torie went straight to the phone and said "Talk Jamie. Talk Joe. Hi, blah blaah, etc, Bye Joe. Bye Jamie." This went on until we went to the grocery store for supplies (milk, bananas, diapers, wine. You know, all the stuff you have to have with a baby.) We headed to the milk side and Torie said "No, Jamie milk." Guess I'm gonna have to find out what kind it is 'cause it must be the best milk. By the time we left, our poor trooper baby was pretty hungry and tired. She told us "Eat dinner." I told we were going to have dinner at the hotel, and she said "No Mama. Eat dinner Jamie's." Finally we were getting ready for bed and Torie heard Tom sneeze. She said "Bless you Papa Tom. Bless you Mama. Bless you Jamie." And she fell asleep. Wow. Talk about making a great First Impression.

Off to Denver tomorrow. This trip it'll be Tom and Torie and me. We're going over a day early so we can have a play day. Hopefully the zoo if the weather cooperates. Torie is so good, and so patient with everything that we want her to have some fun times in our trips. She looks at pictures of Ronald McDonald House in Minnesota and signs "play", "friends". I'm so glad she doesn't associate anything nasty like blood draws, tests, etc. with our time there. I wish you could know her better. She's an easy, sweet, happy girl! I so hope she stays this way!

The GreatGreatGreat..and the not so Great

Today we went to visit Aunt Vera. My mom's aunt, my great-aunt, Torie's great-great-great-aunt! Vera is my Grandma's sister and one of the nicest, funniest people ever. She lives here in Grand Junction, but we never seem to spend enough time with her.The not-so-great part of the day is a red itchy rash that Torie has. I used some adhesive remover pads the other day when I changed her dressing. Won't be doing that again! But hopefully some Benadryl and hydrocortisone cream will have her feeling less itchy soon!

A friend e-mailed the following: "Behind me are the things I cannot change. I accept them, and I learn from them. Ahead of me lie infinite possibilities and ideas waiting to be accessed through prayer, affirmation, and action." Thanks, Robin!

Comments Welcome!

Again, I owe a huge blogging thank you to Erin...She has fixed this so comments can be posted without joining or signing up or whatever other hoops had to be jumped through! I could never have done this without her. And if you have any other suggestions please let me know!

Tom and I just spent an excellent evening with our friends Stacey and Connie Schmitt. So fun. I know I've said it before, but we are so fortunate to have such great friends in our lives. We treasure you all.

IV Dose #2...

Tuesday, September29, 2009

Torie, Mom and I headed over to Denver on Monday and stayed with my Aunt Collette and Uncle Dick. Well, with Dick. Collette again said "Oh yes, I'd love to have you stay" so she went out of town again! Huh. Maybe it's me. Anyway, it was a beautiful drive over...tons of yellows, golds, greens, and oranges. I think sometimes my travels have caused me to forget what a great state we live in. I'll have plenty of opportunity to admire it in the upcoming weeks, though. This was our 1st infusion at The Children's Hospital (TCH), and we'll continue weekly until Minnesota is ready for Torie to start stem cell transplant. Hopefully mid-November. They are working on a donor match as I post. Anyway, we arrived at TCH bright and early Tuesday morning. We had just barely gotten to our room in the infusion clinic when Uncle Shaun showed up! And he stayed all day with us. What a great guy. He hates hospitals. We're pretty lucky to have him. Kristin was our nurse du jour. She came in and Torie stuck her leg out and said "hug leg" for the blood pressure cuff. What a great little patient already! But it never takes long with kids. She had no problems with her infusion, and no reaction. Dr. Thomas stopped in to say hi and it was nice to visit with her. Too bad we didn't get to see Janell, the Metabolic Genetic Counselor. She's done so much for us, she seems like an old friend already. Riley, another little Hurler dolly was there the day before. Maybe one of these we'll get to meet her too. So, we finished up about 4:00 and headed back to Collette's and guess what? She came home! While we were there! I made my Grandma's secret recipe fried chicken and biscuits and had a fun relaxing evening. We were back on the road this morning to come home so I can get some laundry done and get ready to head back next week.

We've been having some problems with Torie's Hickman catheter (Her central IV line). The last few days she's had quite a bit of blood oozing from the insertion site. OptionCare (the home supply company) sent 100 unit Heparin to flush her line with. Heparin is a blood thinner that prevents clots from building up in her line. If it clots off it won't be able to be used, and she would have to have a new one placed. And we don't want that. So, after talking to Dr. Mike, we're going to try 10 unit Heparin and see if that helps.
She's been so good about not pulling or tugging on her line or the dressing, but here she's showing her line to Uncle Shaun. She's such a brave sweet tough trooper. We are so lucky to have her and I hope with these posts you can feel like you know her a little too. Thanks for reading and stay tuned. All we hope for is lots more to come!

The most wonderful time of the year...

...Fruita Fall Fest! You were probably thinking the title had something to do with my last post, but no! Fall Fest is the end of of September every year. Rides, games, shopping, and FOOD! It's the only time of the year that one can find Greek food in Fruita. Yum. Last year Torie was too little to go on rides, but not this year. After our week in Disneyland she's an old pro. The first thing she said was "Mo rides!" and was ready to go. She rode a giant chicken (for Aunt Lettie who finds Mike the Headless Chicken hilarious) with Mama-great, a strawberry with me, the slide with Stacey, but best of all,

was driving a car all by herself!
Stacey, being the faithful Mesa State alum that she is, supported the corn stand. Torie, being the faithful corn-eater that she is, did too. Those girls can chow!We all had a great time and can't wait till next year. If you've never been, definitely worth checking out.

Tomorrow Torie, Mama-great, and I head to Denver to The Children's Hospital for IV ERT. We're hoping she does as well with dose #2 as she did with the first one. Her Hickman catheter - an implanted infusion device - works great. It's like a big IV that goes into her chest and ends in the right atrium. These are great for kids...no pokes! Blood can be drawn through it and when it comes time for her stem cell transplant, it will be given through it as well. Lexie is doing a great job flushing it (to prevent blood clots from forming) and Torie doesn't seem to mind it. She doesn't pull on it or mess with it. Not crazy about dressing changes, but at least she loves "banny's" (Bandaids). What a good girl she is.

Thank you all for your comments on Torie's Story. Your well-wishes, kind words, prayers, and support are appreciated more than words can express. Please keep 'em up...we'll take all we can get!

Torie Snow and the Flakes

Sounds like they should record Christmas music, doesn't it? Uncle Eddy (Tom's older brother) and Aunt Lanny stopped to see us on their way from Wyoming to Arizona. We were very excited to see them since all the other Flakes stopped when Torie wasn't here. We had a great visit with them. The Flake's are all so wonderful to us...we sure wish they were closer!

Wednesday, September 23, 2009

Tom and I just got back from the Grand Mesa. We spent the last 2 nights in our RV with our very dear friends, the Mazon's. Fall has already hit and the colors were beautiful. It did get super cold, doncha know. Good practice for winter in Minnesota! Torie stayed home, but here are some pictures from last year....

Mesa Lakes

I forgot to post this picture from UMMC (University of Minnesota Medical Center). Day of discharge, on our way out of the hospital....

"Flowers for the cute little red-haired girl" How handy that we happen to have one of those!

September 20, 2009

Torie was very excited to be discharged Friday evening after her IV ERT was done. She tolerated it with no problems. Let's keep it that way! We packed up and left RMH early Saturday morning, caught our flight back to Denver, and headed home. Aunt Collette met us at the airport with my car and presents! Our thanks to "Lettie" and her friend Sheryl...so very kind to think of us.

We met so many wonderful people in Minnesota. Torie's "care team" Dr. Orchard, Teresa, Eileen, Dr. Kendra and Dr. Julie, Marie, Beth, Laura.....so many I can't name them all. The plan now is for Torie to continue IV ERT in Denver at The Children's Hospital until mid-November, then we will return to Minnesota to start stem cell transplant. Very scary, but absolutely the best place to be.

Through all of this I am so thankful for my family. They are the best people in the world. Tom is a wonderful husband...his willingness to support my various travels and holding down the fort while I'm gone. I'm so glad that he loves Torie the same as the other 4 grandkids. My parents are so smart, so strong, and so reassuring. Shaun is just like my dad...a rock. Tough enough to carry everyone else and still so caring. Collette and her family are there for us for anything we need in Denver. And the Flake side is supportive in their well-wishes and prayers - especially Torie's 2 awesome Aunties Heather and Erin. We have friends that we can lean on and for almost anything. I wish it hadn't taken this life-altering event for me to appreciate how many important people I have in my life. All my thanks to all of you.

A quick P.S. - Ronald McDonald house collects can tabs for a money-raiser. Please save your can tabs and I will take them to Minnesota when we go back in November. And don't forget to put your change in the RMH collection boxes at McDonald's if you can. Believe me, it goes to good use!

Home again home again jiga-a-jig!

September 19, 2009

Back in Fruita! Ronald McDonald House was great, but there's no place like home. I'm gonna try to give a quick recap of the rest of our week. The schedule I posted? We had 3 days that looked pretty much the same. Monday was kinda rough...figuring out the shuttle was easy compared to figuring out what all the initials on the schedule were and then trying to find them! I'm so thankful I wasn't on my own. It definitely took all 3 of us to navigate our way to different clinics and appointments. I would have been totally overwhelmed. Mom is the most supportive person in the world. Not to mention an excellent mediator for Lexie and I! By the time our days of appointments were done we were all ready to head back to RMH. Torie didn't get her usual naps, but she was a trooper! Kids are such better patients than adults. She'd get done with an exam and say "mo games?" Unfortunately, her great attitude makes me look really immature when I start whining. So I had to suffer in silence. Waaa! Anyway. There's so much to do at RMH that it was difficult to not make some time for playing...

I think Torie and Lexie enjoyed meeting Jerry more than anyone else. Jerry is the RMH therapy dog. He is a super sweet mellow Labradoodle with an incredibly high tolerance level! Kids hug, lay, pet, pat, pull, etc...he just lays there!

Wednesday evening we had wrapped up our appointments and had some extra time so we went out to Maggiano's (one of my top faves) for a celebration dinner. Super deliciously yummy! When we got back to RMH, it was sleep study night. Respiratory brought equipment and she was hooked up for the night.

She sure didn't like her "kitty whiskers" but she never tried to take the off...even in her sleep! That'll make a Grandma proud. She cruised through the night with no problems at all. I wish Mom and I had too, but I think between the two of us we checked her every hour. Yaaaawwwnn!

Thursday was OR day. By the time she left pre-op holding she was getting hungry and a little cranky, but a little bit of Versed changed that. She left Lexie singing "Yo ho yo ho (Pirates of the Caribbean) T-O-I-E!" We spent a very long day waiting for her - she had about 6 different procedures - but everybody was great keeping us updated. A bit of a scary time with the breathing tube, but all in all, everything went well. Intrathecal ERT at 12:58pm. I can't explain the feeling knowing that we are underway with treatment. Part relief, part hope, part faith, and perhaps a side of anxiety of the unknown. But just knowing that treatment has begun feels like we'll have her longer. She felt kinda puny after, but she got to her room on 5D (the Pediatric Bone Marrow Transplant - BMT -) and settled in pretty well. Lexie stayed the night, and Mom and I headed back to RMH. It was "Parents Night In", a special dinner that volunteers host about 3 times a year. Fabulous! Candles, flowers, steak, wine...Incredible. Those Minnesotans have huge hearts! Mom and I both bawled for a while...Again just relief I guess, but definitely tears of joy.

We enjoyed our dinner very much but when we got back to the hospital Torie was eating Cheerios and drinking apple juice. I think that was one of the best looking dinners we'd seen...just nice to see her getting back to her usual. She loves her groceries!

After getting settled at Ronald McDonald house (RMH), we were up bright and early Monday morning to start our week of appointments and evaluations for Torie to be part of the research here and for treatment. She saw "the clown" outside on the bench and said "Ronald McDonald Duck!". Funny baby! We caught the shuttle to the campus so Torie had a nice bus ride. This place is huge! But everyone is so helpful, we got great directions anytime we needed to go somewhere. So...here's our schedule:

Monday 8:00 Consultation w/Dr. Orchard, BMT Clinic, 5th floor PWB
9:30 Labs and Calendar Review, BMT Clinic
10:00 Surgery Consult, Peds Clinic, 4th floor PWB
10:30 Chest & Hip X-ray, Clinic 1D, 1st floor PWB
11:00 EKG, Clinic 1B, 1st floor PWB
12:00 Lunch
1:00 Anesthesia Consult w/Dr. Beebe, check into 3C and ask Dr. to
be paged, 3rd floor Hospital
2:00 Echocardiogram, Gold Room, 2nd floor Hospital
4:00 Cardiology Consult, Peds Clinic, 4th floor PWB

And that was just the first day! The rest of this last week was pretty much the same! Crazy busy. But we managed to get through the day but we were all glad to get back to RMH and go to bed. We have met lots of really nice families there, and 3 other kids with Hurler's Syndrome. It's so nice to talk to them and hear how these kiddos live and thrive with Hurler's.

Torie is tolerating her ERT beautifully! So we're hanging out waiting. I sure you're anxiously awaiting more of my drivel, so I thought I'd let you know about our week here....

Torie, Lexie, Mom and I left Junction Saturday evening, drove to Denver, and stayed at my Aunt Collette's house. Like any smart hostess, she left and spent the weekend in Ft. Collins with friends. But my Uncle Dick picked up the slack, made bagels and cream cheese for breakfast, and my cousin Fachon took us to the airport. We arrived in Minneapolis-St. Paul, got our rental car and found our way to Ronald McDonald House. What a great place! They provide linens, towels, cleaning supplies, everything. They also have volunteer groups that come in almost every night to cook dinner. And they clean-up! WOW!

September 18, 2009

We came back to Univ of Minnesota Children's Hospital to Unit 5D to find our spunky, active, crazy, back to normal baby! She's doing great! Right now we are waiting for her 1st dose of IV enzyme. Laronidase (Aldurazyme{TM}) belongs to a class of drugs called enzyme replacement therapies (ERT) that provides people with sufficient quantities of an important enzyme that they cannot create on their own. The main ingrediant in laronidase is a protein that is identical to a naturally occurring form of the human ezyme alpha-L-iduronidase. Laronidase replaces the missing enzyme and and restores sufficient enzyme activity to break down glycosaminoglycan (GAG) build-up. In a clinical study, laronidase ERT decreased abnormally high GAG substance in urine and decreased liver size, improved lung problems and corrected symptoms such as sleep apnea and airway problems. However, laronidase ERT alone alone has not shown to benefit the progressive neurocognitive decline or improve survival. This is the reason that Dr. Orchard and the University of Minnesota are doing research and clinical trials giving laronidase Intrethecally (IT). Laronidase given intraveneously (IV) does not cross the blood-brain barrier. By giving the enzyme IV and IT, neurocognitive abilty is being being preserved.

Wow. That was lengthy! But you know how windy I am! So IV ERT is in progress while I type. It feels like every drop that goes in is buying our girly just one more day with us.

September 17, 2009 - Late
Torie did great today. She's now in room at Univ of Minnesota Children's. She got her 1st dose of Intrathecal enzyme at 12:58. We're on our way. We feel so fortunate to be here. Minnesotans are super, doan cha know? Ronald McDonald house is an amazing place. I'll post more tomorrow..I've got a week to catch up on in one day! I'll do my best. All my thanks to CAE for her blogging guidance and support!

In the Beginning...

Okay, I'm gonna try to get this started. Be patient, and hopefully I'll improve with time. First off, let me tell you who's who in the story...I'm Cheryl, Torie's Grandma. And Lexie's mom. Right now I'm in the Surgery waiting room at the University of Minnesota Medical Center. My mom is here also, so we have been amazing everyone with 4 generations traipsing about. For anyone who isn't up on the timeline of events leading us to this waiting room, I'll try to give you a brief timeline. But, you know me, brief is so subjective!

March 2009

Bronchiolitis that just wouldn't go away. Grandma-Great (my mom) took her to Docs on Call, Chest X-ray showed some scoliosis (spine curvature) so we were referred to Dr. Deering, a pediatric orthopedic specialist in Grand Junction. She took more X-rays and found a "gibbus" which is an outward curvature or Kyphosis. She also found that Torie has bilateral absent acetabulum, or in other words, no hip joints. She felt it best that Torie wear a hip abductor brace, the "Cruiser". In Torie speak: a "woowoo". She also referred us to Dr. Manchester, a geneticist from the Children's Hospital in Denver who does a specialty clinic in Grand Junction every other month.

In the "woowoo" with Grandma-Great on Snowy Range

August 6, 2009

I went with Lexie and Torie to see Dr. Manchester, the geneticist from Denver. After answering numerous questions from Melissa, a genetics counselor, Dr. Manchester came to see Torie. After some looking and listening, he sat down and told us that he thought Torie has a lysosomal metabolic storage disorder, most likely Hurler's Syndrome, that she'll probably need a bone marrow transplant, not live past age 10 or so, and the universe went crash....

Mom called as we were walking out to the car. Lexie and I were both crying, so mom joined in. She wanted to be here with us, so she and dad left the cabin in Wyoming and headed back to Fruita. It was so nice to have them back. We didn't feel as alone and of course Torie was thrilled to see "mama and papa". (She calls Tom and I mama and papa too. Lexie is mommom and Scott is Daa-ie.)

August 17, 2009

Mom and Dad ended their summer in Wyoming early to spend more time with Torie. Lexie and I took Torie to the Children's Hospital in Denver to meet with Dr. Thomas and Janelle from the Metabolic Clinic. My brother Shaun went with us also. He is always so calm and rational, so he was a very reassuring presence to have with us. They were very certain of the Hurler's diagnosis but they drew blood work to confirm. They seemed to feel that the best place for treatment was the University of Minnesota. We had a lot to think about.

August 31, 2009

After lots of phone calls and dealings with lots of people, we found out that insurance may not cover to have Torie treated in Minnesota. Heart-breaking news since Minnesota is the only place in the world to do Intrathecal Enzyme replacement. Research is showing this is saving Hurler's kids from the neuro-degenerative effects that accompany this disease. In essence, it's saving their brains. Torie is so smart and bright and funny and observant that this was what we felt she needs. Like I said, heart-breaking.


September 2, 2009


We flew out of Grand Junction for a week in Disneyland for Lexie's birthday and for some fun before the unpleasantness of treatment begins. Shaun met us in Denver, a total surprise for Lexie, and went with us. Torie loves flying on planes "inna sky". We were exhausted when we got there but ready for big fun the next day!

September 3, 2009

Disneyland was great! Our 1st ride was Alice in Wonderland. Torie got off the ride and told Lexie "WOW!" She loved all the rides but Dumbo and Small World were high on the faves list.

Tom and I took Torie back to the hotel and Lexie and Shaun stayed to play at Disney. About 4:30 we got a call from Teresa Kivisto at the Univ of Minnesota...Torie had been accepted into the program to receive Intrathecal enzyme and stem cell transplant! This time it was tears of joy! Disneyland really is magic! We started planning our trip to Minnesota.

The theme of Disney's parade is CELEBRATE! and we had every reason to!

September 8, 2009

Lexie's 22nd birthday! We sang "Happy Mommy" and enjoyed a last day at Disney. We flew back to Grand Junction on the 9th, and turned around to go back to Denver on the 12th.

So I guess that catches us up some. Torie just got to recovery and we get to go see her. I'll post more about our week here shortly.

Lexie's horoscope for this week:

Saturn - the planet that's caused you misery these past 2 years - finally does you a favor when it conjoins the Sun in Virgo on the 17th, freeing you of a stubborn problem. It'll still cost you time or money to resolve the issue, but the price is worth it for the peace of mind you'll get in return.

Weird, huh?