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.