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!