Our Jada Rose

2010-02-27T03:55:00.001-08:00

Skiing at Snow Basin

2010-01-23T21:44:00.000-08:00

Today I gave Jada two options: 1. Go tubing. 2. Go Skiing. She didn't hesitate with her response. So we packed up our gear and headed up to Snow Basin for the day. It was windy, snowy, and cold...we had the time of our lives! Lots of laughs, lots of tree trails, and one Hot Cocoa break. I decided to brave the elements ...with the video camera and this is the product.

LONG TIME NO SEE!

2009-11-14T02:12:00.000-08:00

Where to start? Basically I (troy) now have a new job and I work out at the SLC airport doing their HVAC. Its not a job that I am sitting at my computer all day anymore, and so you have seen a HUGE drop off in my frequency of posts and updates.

First and Formost this blog will likely change titles as Andrea and I are expecting a new baby sometime in late June! We are very excited about it and Jada Rose can't wait to have someone else to play with besides her boring dad. Rather than go on and on about our lives, I will start from the beginning of our camera and see if that fills in the HUGE gap that my lack of posting has begun?

Top: was taken this afternoon. Jada was coming in for a Kiss!

Above: Is me explaining to Jada how long it will take to clean the lens if she kisses it.

Above: Two of the three musketeers that run our home!

Above: Perhaps the two athletic of the three as well.

Above: a pose from a Rose

Above: Yes our backyard is on a downhill slope. This can cause people to walk and even stand with a bit of a "tilt".

Above Perhaps the most exciting of Jada's adventures is going to Disney on Ice. SHE LOVED IT!!!

Above: Jada pasting on one of her manufactured smiles. Probably because something was keeping her attention on the ICE!

Above: Perhaps a little less manufactured of a smile as she knows her mother will hold her to a far more strict policy when it comes to legitimate smile.

Above: Now that's the TRUE smile of Joy sitting next to her Grandma watching princess skate right in front of her!

Ok had to slip this in. Its the three ORIGINAL cousins! They are in for some serious changes here in the future, and stand to be considerably outnumbered! Especially the male! This was from earlier this summer waiting for the Circus.

new post comming soon!!!

2009-11-09T16:32:00.000-08:00

I know I've been a huge slacker! So a new post is comming to catch u up on everything going on in jadas and our families lives...I promise!

Fishing trip to the Uintah Mountains

2009-07-25T13:34:00.001-07:00

On Thursday Jada Rose, her Grandpa Nolan, and I went up to the Uintah Mountains ( Wall Lake ) for a day of fishing. We had a blast! Bugs were terrible, but thanks to a few gallons of bug spray, and an afternoon wind we finally were able to deal with them.

Day 5

2009-06-13T01:09:00.001-07:00

Ok sorry for no day 4 update. We left our battery for the camera at our Hotel and drove 2 hours to SeaWorld. I did have my video cam and have TONS of footage. But the hotel internet is way to slow to download it right now. So we will just have to jump into day 5. The small stick figures in the background of a couple of these are Joel and Troy trying to surf. We put away the foam boards today and went hard....and it was...hard!

day 3

2009-06-10T21:54:00.000-07:00

Jada, Blake, and Briggs enjoyed the Magical Parade...Joel Loved it TOO! He was quoted as saying "it was beyond Magical!".

Mommy and Jada enjoyed many many rides today. Daddy was envious!

Blake, Jada and Briggs worked themselves silly today. Blake fell asleep at 6pm and was OUT!

The face of pleading for "ONE MORE RIDE?"

DAY 2

2009-06-09T20:35:00.001-07:00

Today we slept in while the Taylors went to Disneyland for the morning. The Taylors caught up with us at Newport Beach after lunch. We ate a magnificent dinner at the Crab Cooker! YUMMMM! Tomorrow its early morning with the Disney Characters, and....who knows?

"Mommy, burry me!!"

Strike The Pose

Not just any sandcastle, A Dinosaur Sandcastle!

Walking along the boardwalk...well...playing TAG along the board walk. Pretty much the whole walk consisted of us telling our kids to stop jumping out in front of people riding their bikes!

Joel and McCall's youngest son, Briggs. He now officially owns the Guiness World Record for ingesting sand! Youve never tasted a Hot Tamale unless its been basted in sand!

California day 1

2009-06-08T16:57:00.000-07:00

As far as hair photo's go...this is the happiest one.

The first time for both Andrea and Jada on Its A Small World...LOVED IT!

Say CHEESE...errr whatever.

Adrenaline Rush on the Merry-Go-Round...don't knock it til you've tried it!

Jada: "This is the best Corn on the Cob EVER!"
Andrea: "Troy, how many freaking pictures do you need of her eating Corn on the Cob?!?"
(this was my 15th photo)

At Uncle Bibby's and Aunt Claires/ Ghostbusters with Cousin Troy

2009-05-18T09:54:00.000-07:00

LOOOONG Update

2009-04-22T08:01:00.000-07:00

Ok so rather than just post some random story like my last post I think I should give a full update for Jada Rose and the rest of our family. We are LOVING this warm weather! Jada already wants to be running outside in the sprinklers, and swimming! I so wish she didn't have a compromised immune system because I believe our entire summer would be spent at Pineview reservoir in our boat. Speaking of the boat we are going to start cleaning it out very soon at Jada Roses constant request. It is hopeful thinking on my part that we can get the Liver Clinic to approve Jada to swim and play up at Bear Lake... We are hoping with the size of that lake and the cooler temps that the bacteria level in that lake will be low enough for Jada to enjoy swimming in there. If not, then Ohhhh Wellll :( Our back yard is undergoing LOTS of construction we are currently having a HUGE and I MEAN HUGE tree taken down in our back yard. This tree can be seen from North Salt Lake (and I'm not even kidding). It is dying and we are worried the branches will fall off one of these winters and injure someone or something. It is anticipated that when we finish this little project ($1200) Yah that's a Kauai vacation! That we can plant grass in the remaining areas and have a play set for Jada to swing and slide on.

Jada's EBV count for the most part is un-detected although that can change very quickly. But un-detected is very very good! Her other labs are just perfect. Every day at least 3-5 times each day I stop and watch her in awe. Honestly three years ago I was pleading with God to let me be a dad so that I could witness this little girl learning and playing and doing all the things she is currently doing. So yah basically I am living a dream every day. Jada Rose has acquired my love for cereal, and now joins me for a midnight snack every night of cereal and milk. Andrea has to buy 3-4 gallons of milk a week just to support our habit! Jada Rose is so funny if I have two bowls of cereal SHE has to have two bowls of cereal! When she finishes drinking all the milk out of the bowl it is very important that she shows me SHE was able to drink all her milk too!

We have introduced both dogs back into the home again and Jada simply loves them! If we are at cousin Troy's house or grandma Dawny's house often the only way we can get her home is to say "Jada your Doggies are waiting for you to feed them". That seals the deal virtually every time.

Andrea is working her butt off in the Real Estate market. She enjoys working and is very good at what she does! She is also doing lots of exercise, and recently started playing Tennis! She has a mean back hand! But then again I already knew that before she was playing tennis! ;-) Because of our work schedules, we dont have a lot of options available for about four hours out of the day. Andrea has been researching the Challenger schools for Jada Rose, and we are going to enroll her for summer. Jada Rose is so smart in several areas that I am excited to see how she excels within a more regimented system. Her favorite toy is her dinosaurs, she can distinguish between 20-25 different dinosaurs, and knows their pronunciation. Paliocincus, Dimetridon, Apatosaurus, Ankyliasaurus, Pterodactyl, T-rex (of course), dipladocus, brachiasaurus, triceratops, protoceratops, velosaraptor, UTAH raptor, Iguanadon, stegosaurus, apatosaurus, brontosaurus...the list goes on and on!

Most exciting news is the recent addition to our extended family! Aunt Teya and Uncle Sean had a baby boy last week his name is Braden Mark Wilson. He is perhaps the cutest little baby on earth at this moment! I simply love him! I posted an update on his blog From the Eyes and Arms of a Very Proud Uncle

The future is bright for our family as well! I am soooo excited that Aunt Loni and Uncle Zak are going to be having twin girls!!! Honestly I was of the opinion that in order for me to enjoy football, sports, sci-fi movies, making things that I would need a son. I was WRONG! Jada Rose loves all these things as much as I do! Plus I get to spoil little girls and give them everything they want! So yes I am excited to be having more girls in our family. Andrea and I are contemplating having a baby sometime in the future (or rather trying). Its not an easy thing for us though because we both still have some post traumatic stress with Jada Rose's situation. Last night Jada said the prayer for dinner...who are we kidding, she "HAS" to say it every dinner!... and typically it is as follows "Dear Heaven-fathuh, thanks for food, thanks for healthy bodies, bless food so that healthy bodies, bless donor family, nama-Jes-Christ-AMEN!" So I told her "Jada did you know you can ask him for any other thing you might want?" She looked at me like "Seriously you just now are telling me this?" Of course I was thinking that next time she would perhaps add to her usual prayer...Andrea and I started chit chatting as we were eating, and during this time Jada was thinking about what else she wanted to ask for. When all of a sudden we hear her say "Dear Heaven-Fathuh...." Andrea and I put down our food AGAIN and listened to PART II of the prayer. I thought for sure we would hear Disneyland, or Lagoon, or more Dinosaurs in the amended version...everything was exactly the same until the very end "...And pleas bless that I have a brother, Nama-Jesu-Christ-AMEN!"... Tough to let that one go without some some deep reflection!

Well that is the end of a very prolonged update. Oh I almost forgot! Last Saturday Andrea and I were getting ready to take Jada Rose to her Grandma Dawny's house so that we could go to the Red and White game and then see our new Nephew Braden Mark. Jada Rose insisted that she "Go to the Football Game!" We kept trying to tell her all the fun things Grandma had planned for her when it occurred to me "My Daughter wants to go to a Freaking Football GAME! What kind of an Idiot father would not want that?!?!" So I convinced Andrea in a slightly more matter of fact way than she would have appreciated that "MY DAUGHTER WANTS TO GO TO A FOOTBALL GAME WITH US. BY DARNED SHE IS GOING!" Jada had a ball! Three of her favorite men were present Blake, Tippetts, and Uncle Zak! While we were tailgating she kept begging to go into the stadium to watch the game. During the game she laughed, cheered, sang Utah Man, and visited every individual within three rows of where we were sitting! So the spring is off to a good start! Hoping that the summer holds true to form!

Warning:

2009-04-15T08:51:00.000-07:00

If you are playing the "I took your nose" game with a three year old, you know the one where you say "I have your nose" and its your thumb disguised as the child's nose? DO NOT finish the game by patting the child on the head as you walk away!I did this yesterday, and for several moments confusion reigned as Jada Rose was sure I had decapitated her! Hysterical screaming ensued until I could race her into the bathroom where she could see her head was still attached! Sheesh!!!! Maybe a little less Tom and Jerry for a while....

First Zoo trip in 2009

2009-03-17T08:41:00.001-07:00

Family Birthday Party for Jada Rose

2009-02-25T11:22:00.000-08:00

Facebook Video

Onkel Bibby's Luge

2009-02-11T10:10:00.000-08:00

Onkel (German for Uncle) Bibby created perhaps one of the neatest luge runs in his back yard. It begins on his deck where onlookers lounging in the pristine waters of the Hot Tub can enjoy the cascading luge that unfolds down through several berms, up one speed check, and into the deep dark forest of Cave Hollow Gully. We have been spending several days a week here because it is so fun. I apologize that this visit (which was in the dark) was the first time I had videotaped the event.

The experience begins with me carrying Jada Rose back up to the beginning of the luge. The snow depth is such that if I were to let Jada walk herself, she would be overcome with exhaustion as its about 3 feet deep. Plus its good rehabilitation exercise on my healing tendon.

Walking with Dinosaurs!

2009-01-19T12:10:00.000-08:00

Jada Rose and her two cousins (Troy and Kit) went to see "Walking with Dinosaurs LIVE" last week. Jada Rose had a wonderful time and accumulated a few souvenirs to prove it!

Sugar Bowl 2009

2009-01-13T11:10:00.000-08:00

Jada Rose Painting

2009-01-12T12:13:00.000-08:00

Last night while Andrea was watching some TV downstairs, Jada Rose and I decided to do some painting! Jada did not feel like my painting was up to par, and kicked me off the canvas! So I grabbed the video camera and enjoyed watching my favorite "Artist"!

Getting eyes checked!

2008-12-16T11:46:00.000-08:00

We have been a bit concerned with Jada Rose's eyes because she rubs them a lot and say's "Owie Eyes" all the time. Today we had them checked and she has great vision and there were no apparent issues. However the optometrist did say the EBV could be causing some eye discomfort. He wrote up a script for her to have here eyes scanned next month when she gets a CT scan to check for possible nodes stemming from EBV. Here is a photo in her "HOT GLASSES".

Pre Christmas Update:

2008-12-15T14:07:00.000-08:00

Jada is gearing up for Santa Clause to come! She doesn't have any favorite toys that she is asking for, so that is making it fun for her mom and I to try several different things! Her all time favorite movie is Sleeping Beauty. On the blueray version there is a Dragon Adventure that takes about 5 minutes. Jada watches that one bonus feature over and over again! She also has the songs memorized and likes to sing along while dancing with whomever is fortunate to be in the room at the time.

On a slightly downer side her EBV showed up again at around 4000 :-( Were back to taking regular labs until it goes away. Overall she is healthy, happy, and running wild ! She absolutely adores Kirstin and spends a lot of time with her during the week. She calls her "Kirsey". Brant is Kirstin's husband and has been over several times as well. Yesterday afternoon he showed up to clear off our DRIVEWAY, as I am a cripple right now! This is a cute pic that Kirsten took of Jada Rose...

Leaving for Las Vegas!...minus one :(

2008-12-04T10:56:00.000-08:00

Tomorrow we were supposed to be going to Las Vegas to see Grandma and Grandpa's booth they are having at the National Rodeo Convention. However about a month ago Jada's Dad had an injury. What was initially thought to be a severely sprained foot turned out to be a ruptured Achilles Tendon. I am having it repaired tomorrow but Andrea and Jada are continuing with the vacation as planned. Andrea offered to stay but when I explained to her that if she had suffered the same injury and I had a vacation planned I would hope she would want Jada and I to go have fun rather than deal with what is not a life threatening injury. The Liver Clinic cleared Jada to go to Vegas...Yah we were surprised as well! They said "Jada is minimally immune compromised and should be fine so have fun!"...Sweet! That is actually pretty cool for us to hear! So tomorrow I'm going in for surgery, and will rely on some friends and my sisters to check up on me for the weekend.

Jada is just a riot to be around. She has seen me walking with a considerable limp, and now thinks its pretty cool to limp herself. When she is asked what is wrong? She replies "I have a big sliver!" We check it every time, and every time that darned sliver wanders to another toe, or to another spot on her foot! Still I bandage her up and consider it a compliment! Andrea set up some figurine Santa Clauses around the house and said to Jada Rose "Who's that?" Jada would reply "Paul Kruger!"...hmmmm for those of you who don't know Paul Kruger is a fairly large Ute football player and since the Utes wear red and white Jada automatically thinks it must be Paul Kruger with his "cool scar". I hope Max Hall doesn't have any Post Traumatic episodes when he see's Santa this season! ;-)

Tonight is my last night being able to put weight on my foot for about a month, so Jada and I are going to LIVE IT UP!!!

In case anyone was wondering what a ruptured achilles tendon looks like? Allow me!

To Grandma's house for Thanksgiving Dinner!

2008-12-02T11:33:00.000-08:00

There are more photo's of Jada Rose and her Thanksgiving feast, but they are on her Grandma's camera which is currently in Las Vegas! We will get them on here soon.

I cannot go through this day with out THANKING an unknown family for donating the organ of their deceased child to save my little girls life.

2008-11-27T09:49:00.000-08:00

In your darkest hour, you selflessly gave, and became hero's in our brightest triumph...

THANK YOU!

Jada visits Santa

2008-11-14T19:43:00.001-08:00

Today Jada Rose visited her grandparents at the South Town Christmas Show. Santa was on site and Jada visited with him for a few moments. What did Jada ask for? "I want a Train". Possibly motivated by a Disney Christmas train we purchased in Disneyland that is to be used when we set up our Christmas Tree...Well see if her wish list changes at that point?

Snow White

2008-11-04T07:45:00.000-08:00

Ute Scars...

2008-10-30T11:21:00.000-07:00

A few weeks ago Jada Rose came into our office and pulled up her shirt showing me her tummy. She looked worried and pointed to her scar saying "Big owie?" My heart broke! She had suddenly realized that there was something on her that wasn't normal. She's going to have this scar for the rest of her life. But on the same hand I personally take pride in this scar it represents a life saved, a life donated, and tears upon tears of worry. It then occurred to me! "Hey Jada wanna see who else has a cool scar like yours?" I showed her this photo of Paul Kruger. Then said "He's a football player for the UTES! and HE HAS A SCAR JUST LIKE JADA ROSE!" Her eyes became wide and she immediately beamed a HUGE SMILE. "Cool Scar?" She said. "YUP!" I replied. Welcome to the Paul Kruger Fan Club Jada Rose!...and thank you #11 for making my life a little easier as a Ute fan and as a Dad.

Background on Paul Kruger You may recognize him. He has spent some time with Charlie Cooper at PCMC over the last year.

I have arrived...

2008-10-28T08:20:00.000-07:00

To be honest, 3 years ago when we found out we were having a little girl, I was an idiot. I actually sulked a little bit. I wanted a boy. I wanted to have someone who would watch Star Wars, and have Light Saber fights with me. I wanted someone who would sit through an entire football game with me and ask questions about players and plays. I wanted a boy who I could chase around and tackle. One who would tackle me too! I wanted someone who begged me to take him fishing, go skiing, watch cool movies like Superman. Little did I know that I was an idiot who had not arrived. I was an idiot! Look at my sisters and my wife! How dare I socio type women to think a boy would bring me more enjoyment than a girl?! Sorry to anyone who has only boys, but I have it better than you! Not only do I have a LITTLE GIRL who begs me to go fishing, snow ski, plays tackle football with me, watches all three quarters of Utah football games with me, but she is adorable! A true princess! She wants to be Snow White for Halloween! She takes 48 My Little Ponies EVERYWHERE! Gives the best kisses a dad could want, loves dogs, wants to play Light Saber Wars, sees young ladies out on Prom night and says "Look! A Princess!" and is one hell of a tackler! Well today I have arrived at that moment in a Fathers life when he says to himself "Am I really thinking this?". This morning something was tugging at me. I was excited for something and I couldn't remember what it was! I didn't even pay attention to NPR on the way to work because I was racking my mind over what it was I was so excited about! Do I have a flag football game tonight? No, thats on Wednesdays. Is there a football game on tonight? No. Utes play on Saturday. Is there a movie coming out today? YUP!!! Thats it! I have been looking forward to this movie for several weeks now! Today Tinkerbell hits the stores!.... Did I really just think that? Yup I did. I am actually excited to get off work and go straight to the store, where with baited breath I will find the shortest line through the check out, and then BOLT straight home. I can't wait to see Jada Rose's face when I hand the movie over to her! Well cook up some popcorn, heat up the Ute Room and enjoy what is sure to be a timeless classic...UNBELIEVABLE! I HAVE ARRIVED! Three years ago if I were to read what I have just written I would have punched myself in the face. But then again three years ago I was an idiot!

Update

2008-10-24T07:13:00.000-07:00

Jada has been pretty busy the last few weeks. Andrea has been working a lot lately and we felt like we were putting to much strain on family to watch Jada during the days without doing our part in watching others kids. So we decided to hire a nanny! Andrea is with Jada until 10am then I get home at 2pm so Jada spends about 4 hours a day on Tuesdays, Wednesdays and Thursdays with Kirsten! Jada loves her and the two seem to be bonding very well. Kirsten takes Jada to the park, paints, colors, plays with My lil Ponies, bakes, and watches an occasional movie with Jada Rose.

Last week we took Jada to the University of Utah game and she was able to be on the field when the players came out of the tunnel. She loved it! Jada enjoys singing Utah Man but we are having issues with her singing with a mouth full of food! Two weeks ago she choked on a pizza and this week she choked on some tortilla chips! So in the future we are going to try and anticipate the Utes scoring by not giving Jada any food at that point! While at this game her aunt Loni took her for a walk around the stadium. While on this walk Jada informed her aunt Loni that she was read to use the pott! So Aunt Loni laid about 6 layers of TP on the toilet seat and Jada used a public restroom for the first time. YAY! Jada wears big girl panties throughout the majority of the day. Recently she received a really cool gift from Zane Taylor's dad (Zane is number 77 for the Utes and plays center) he sent Zanes arm bands that he wore in the Wyoming game! I know a lot of people might think that is gross but we think its pretty cool especially since they have the grass stains still in them! Unfortunately for Jada she wont be playing with them anytime soon as most things end up in her mouth these days :0

I know my photo's have been lacking lately but hopefully Halloween will provide for some photographic moments.

Jada and Britty go to Frightmares

2008-10-14T11:14:00.001-07:00

Chilton Look-alike Meter

2008-10-07T08:34:00.001-07:00

Well I'll be! Lets be honest though, were hoping that as the years progress, this needle takes a dramatic tip to the left!

MyHeritage: Look-alike Meter - Descendants - Family history

Labs are back.

2008-10-01T11:18:00.000-07:00

Good news is all her liver values look good. Bad news is all her liver values look good...
So it was probably the Valsyte that was causing her to be sick. We will go off the Valsyte and try another anti-viral. This stinks because there are sources that point to 9 months of Valsyte as a contributing factor in achieving negative EBV. CRAP! We would have liked to be able to give that a shot. Jada and Andrea are on their way home to take a MUCH NEEDED NAP. This is actually our second try on Valsyte, when we were in Disneyland Jada was having stomach cramps, and being very lethargic, so we discontinued at that time to help her enjoy that specific situation. Hopefully her EBV will drop again. And hopefully we will see our little Bugaboo back in full stride ASAP!

Jada Rose is STILL sick!

2008-10-01T07:32:00.000-07:00

Jada was throwing up all day Sunday, she then stopped early Monday morning. We thought she might be over whatever it is that is making her so sick. Last night she started throwing up again! We are pretty worried about her right now. Andrea is on her way up to the hospital with Jada and I am at work standing by for information. When we spoke with Dr. Jackson last night he stated that it could be any number of things, and that we needed to get her in for tests today.

Could be signs of PTLD
Could be Viral
Could be from her Anti-viral that we are giving her to try and stave off PTLD
Could be a combination of any of the above.

....Sigh....

Utah vs. Weber St.

2008-09-29T12:38:00.000-07:00

Jada has had a nasty stomach flu! BUT we sure had a fun time with her at the game on Saturday before she got so sick!

Ahhhhh Sundays!!!

2008-09-21T17:27:00.000-07:00

8am...slept in
9am...woke up-Pancakes!
10am..watched Nightmare before Christmas
11am..got ready for church
12pm..still getting ready for Church
1pm...Arrive at church
----three "time outs" later, grapes spilled all over the Gymnasium, 2 boxes of Mike and Ikes, and 4-5 visits to see the Fowlers (Jada's favorite family who sits near us in Sacrament Meeting), we head home for some real food----
3pm...make lunch
4pm...settle in to the Ute room for an afternoon nap and showing of Peter Pan (Jada's request of course)
4:30pm..all three individuals are sleeping soundly as Peter Pan continues.
5pm...Dad wakes up and finishes watching Peter Pan while the girls still sleep.
6pm...Dad gets the camera

Breaking News!

2008-09-16T12:14:00.001-07:00

We just got a call from Jada's liver doctor, and her EBV count is at its lowest level since early June!!!!!!!!!!

This means her body is fighting the virus!!!!! WOOOHOOOOO!!!!

EBV causes PTLD a terrible form of cancer in transplant patients.

June the count was 4,000
July the count was 6,000
August the count was 13,000
Septembers count is 1,500

I think ill go watch my favorite youtube again!

Jada Rose in Disneyland 2008 (Highlights as posted on Utefans.net)

2008-09-15T11:43:00.000-07:00

Ok here is my final version of Jada Rose's Disneyland trip! Honestly I can't get through this without some form of ocular precipitation. With her uncertain future, and recent issues, you have no idea how neat this experience was! I hope that as you see her smiles in this video, you will understand to some degree how much happiness you caused for this little girl.

I have actually filmed all of her favorite rides in their entirety,(I wont pain you with all of those) and she watches them non stop! I myself do not remember very much from when I was 2.5 years old. But what I do remember, has been enhanced if not created by my parents recording, and replaying that memory for me. Trust me when I tell you she will be seeing this footage for years and years to come! She will never forget her first trip to Disneyland. THANKS UTE FANS!!!!!!!!!!

Video Montage of the last two days...

2008-09-10T01:05:00.000-07:00

I know its kind of jumbled together, but that is how our days have been! Jada is doing soooo much better since we temporarily took her off her meds. We are just enjoying having our little bugaboo around and acting like normal.

Meeting Minnie Mouse

2008-09-09T21:01:00.000-07:00

Jada is feeling TONS BETTER TODAY!!!!

Jada Rose riding Peter Pan

2008-09-09T00:14:00.000-07:00

Jada was starting to feel not so well at this point in the day. This was one of her last rides before we went back to the hotel to sleep for 5 hours! I wanted to try my picture in picture effect though, so here it is!

Day 1, Part 2

2008-09-08T17:11:00.000-07:00

Ok I think I worked out the kinks in the video. This video clip is A LOT longer. Sorry I was trying to trim them down but took some heat from family members back home about them not being long enough.

So I haven't said a whole lot about this because...well I don't want to scare people too much. Lately Jada's EBV levels (epstein bar virus) are more than double what they were when she had her tonsils out. They started to drop a few weeks ago so we let her immune suppressing meds come back up. Well the EBV sky rocketed (this is kind of a big deal because EBV can cause cancer) So last week they put Jada on MAJOR anti-viral to try and get the EBV under control. Well last night Jada had a really hard time sleeping and has had tummy aches all day. We called her liver doc and she said to take Jada off the anti viral as it could be what is causing this. Then when we get home to try and resume it. She really wants Jada to enjoy this experience. So I have been in the hotel room most of the day with Jada watching movies and rubbing her back while she hopefully gets over this little side effect. Hopefully tonight she will be ready to rock and roll and we will hit up some evening rides and fireworks. She is napping right now. As you can see from the video she was having a BLAST up until last night. We sure do love Utefans.net for making this happen!

We have had over 10 people yell at us "GO UTES!" since we have been here. Even some people in kewg apparel said "hey Utes! Go Utes!" (whooda thought?). Andrea's parents flew in on stand bye and are staying in a local hotel. They took Andrea out for a bit, and are riding the rides that Jada wouldnt be able to ride anyways. So that is making it nice for at least one of us to get out and enjoy the Cali Sun. Jada just adores them and was pretty stoked to see them.

Day 1, Part 1

2008-09-07T12:15:00.000-07:00

Were here! Currently Jada is taking a LOOOOOONG nap. We were up at 6 am and she didn't get to sleep until about 1am! Wonder why? There was a slight tantrum when she realized we would be taking a nap before any "playing" took place.

TODAY IS A HUGE DAY FOR US!!!!!

2008-09-04T08:03:00.001-07:00

First off HAPPY BIRTHDAY to my wife Andrea! The sexiest woman I have ever met, my intellectual superior, and the mother of my child! Proof that a homely boy from Bountiful Utah can win the lottery!

Second- HAPPY LIVER BIRTHDAY to Jada Rose! Two years ago today she received the gift of life from a family who in their darkest hour had the bravery and selflessness to literally turn death into life. Whoever you are, wherever you are, I weep for your loss today, as I will for the rest of my life. Jada Rose, HAPPY LIVER BIRTHDAY! You are the toughest person I have ever met, and the second most beautiful girl I know!

...oh and GO UTES!

"Nigh Nigh Time" at the Chilton House...

2008-08-28T10:57:00.000-07:00

Mommy and Jada Rose settle in for a bed time showing of Peter Pan

I think Mommy is starting to fade...Chances are she will be in "Never Land" before Wendy, Peter, and Michael!

Jada Rose Goes Fishing!

2008-08-18T13:51:00.000-07:00

Jada Rose and Dad decided to go fishing on Saturday. Jada had a BLAST! We caught a couple lil guys together, then Jada wanted "to do it by her self". She decided she would stick the entire pole into the water. Realizing the obvious error in etiquette I tried to correct her. "NO" she yelled "I DO IT!" I figured fine no problem we have already caught some fish she can just play with the pole for a while. Next thing I know the pole takes an unusually large tug from the depths of what should only be a small trout pond! I grab Jada and the Pole, fearing Monstro the whale might pull her in, and we successfully wrestle in a 17 inch trout THAT JADA ROSE CAUGHT! As near as I can figure, the big fish are sitting at the bottom. So Jada utilizing her innate fishing senses (that her Dad is obviously lacking) had exactly the right idea! After we were done, all she wanted to do aside from buying more "Otter Pops" was "show Gampa". So on the way home we took a detour and Jada proudly displayed for him, her days catch.

Jada's belly is down in size (good)her labs today showed a slight increase in her GGT (not so good) so we are VERY heightened on rejection alert.

An Update...

2008-08-13T10:17:00.000-07:00

The update is that we have unanswered questions...

Jada is happy and healthy to the casual observer. BUT some things have us worried. Her EBV numbers are staying the same. The Epstein Bar Virus (EBV) is what can lead to a terrible cancer called PTLD. We REALLY REALLY REALLY want that number to go down. Jada gets a immune inhibitor twice a day called Prograf. Catch 22 is that the prograf causes the EBV to live without consequence in her body, so we lower the Prograf to hopefully lower the EBV. Scary thing about doing this as her prograf drops her body becomes more and more susceptible to rejection. This puts us in kind of a balancing act.

In this balancing act we try and keep an eye out for signs of rejection. We are supposed to get labs drawn every week. However on Monday she was late for her prograf dosage and we had to get her back into a readable dosing schedule. One thing we are very concerned with is her large tummy. Last week Dr. Book said that Jada's spleen does look enlarged and that heightens our concern a bit. Andrea and I have noticed in the last couple days that her tummy is getting even bigger. Hmmmm... She does not have any rashes or fevers, and her poop still has color. All of which can be signs for rejection. Yet we still worry. Jada will be going in for Labs tomorrow and we will find out then what her liver numbers look like.

I need to get the video camera rolling soon because she is doing some pretty cute things. Her favorite movie right now is Superman Returns. This is a welcome break from the usual animated movies. Jada has a superman cape that she puts on and pretends she is flying all over the house. She knows who the "Bad Man" is (Lex Luther). And is pretty impressed with Superman's short "H o s i p i t o l" stay.

Throughout the day Jada asks if it is time to go to Disneyland? We tell her "one more month!" to which she replies "I'm essited to go Disneyland!". Andrea is working A LOT with her real estate. And I am continuing to work two jobs. Grandma Dawny is saving our collective anus's with her babysitting! Hopefully tomorrow I will have some good news. Jada's cousins are currently in Lake Powell :( WE WISH SO FREAKING BAD JADA COULD DO THAT! Oh well, its life. We know they are having fun and pray for their safe return.

Prayers for Jackson!

2008-08-08T11:34:00.001-07:00

Jackson Hardy's family are close friends of ours. Jackson is undergoing open heart surgery for Hyposplastic Left Heart Syndrome (HLHS) right now at PCMC, please send prayers that the operation, and recovery will be successful!

Slip N Slide!

2008-07-28T12:49:00.000-07:00

Jada Rose and Troy Danny enjoy a Saturday evening on the Slip n Slide that was purchased by Grandma Dawny and Grandpa Nolan!

Jada's First Swim!

2008-07-25T12:55:00.001-07:00

Jada Rose went swimming yesterday! Erney Markisich converted his pool to a Saline Pool with a state of the art filtering system. The pool was left alone for 24 hours with no one swimming in it, and we felt like it was a good time to give it a shot. As you can see Jada had a fantastic time!

Some presents from an anonymous friend!

2008-07-15T11:36:00.000-07:00

Jada had to get labs drawn today. She had NO tears whatsoever. In fact when they are done poking her she whimpers out a small "thank you" to whoever it is that is drawing... When Jada and her Mom arrived home there were some boxes waiting on the front porch... Someone sent Jada Rose some pretty fun toys! We know it is from an anonymous individual who wished to remain anonymous. However the color of these two otherwise very comfortable chairs has us very perplexed. Could it be from a TDS board member who is now leaning back in their chair with a satisfied smile knowing they had done something wonderful for some Utes all the while, exacting a portion of their personal agenda at the same time? Or is it a true Ute fan who felt we needed some diversity in our otherwise VERY RED lives?

In either case all gifts are wonderful! Andrea said the chairs are "VERY comfortable" and will work perfectly in our back yard!. So to whoever you are, THANK YOU! THANK YOU! THANK YOU!

Spending some time at Grandma Dawny's house!

2008-07-15T11:35:00.001-07:00

2008-07-10T07:45:00.000-07:00

Yesterday Jada Rose recieved some get well cards from Swisslegoman's (A fellow Utefans.net person) kids...Just had to post them!They also sent a little princess crown that she wore ALL DAY LONG! Hopefully I will get some pic's up of her wearing that sometime today.

This is just too cool for words!

2008-07-09T09:56:00.000-07:00

So I spend an obscene amount of time on Utefans.net. When Jada went into the hospital last week Chris (head honcho of Utefans) came by PCMC to say hi. He said they wanted to bring some flowers and/or a toy for Jada Rose. I told him we can't have flowers around her but a toy would be fine. Well one week later here's the "toy" they came up with!!!

Here is the link to a few messages posted on the subject...

Utefans.net

(by the way I am "Snowbirdute" The name was created back in the winter of 2003-2004 when Rob Christensen and I were spending all of our days off at Snowbird...I think cumulatively we have both been skiing once in the last 3 years??? Sheesh!

Anyways how bout these Utes?!?!?!?! What they have done for Jada Rose...Now that's what I call "living right". ;)

ITS OFFICIAL!!!!!

2008-07-09T08:17:00.000-07:00

NO SIGNS OF CANCER AT ALL!!!!!!!

An Update

2008-07-08T12:44:00.000-07:00

So basically we ended up going back into the hospital on Saturday because she did not want to drink at all! She was on IV's and in the ICS all Saturday and Sunday. Yesterday they let us come home with an IV in because she simply did not want to drink at all. She would eat but no drinking.

So after home health care came to set up the whole IV thing I decided to give jada rose a half time speech that she wouldn't forget. Jada's mom went out to get some shopping done around 8ish.

Jada LOVES riding rides at Lagoon and to a lesser extent the Zoo. Below is a LOOOOOng youtube of her riding some rides at Lagoon just to give you an idea.

Over the last few months we have been teaching her about this cool place called Disneyland where the rides are even BETTER than Lagoon! Her favorite ride s at Lagoon are the haunted houses....I have no idea why, but she just loves them! Only she calles them "monster rides" she begs to go ride monster rides every day. We told her at Disneyland there is even a "Disney Monster ride". We get on Youtube and watch haunted mansion clips, matterhorn clips, and anything else that seems close to what she has enjoyed at Lagoon.

So last night she is eating some Mac and Cheese simply refusing to drink anything. I start preaching on and on about some "cool new disneyland rides that are on the computer, and if she will drink some juice we will watch them all night! She knows the old Mickey Mouse Club theme song by heart so I even went in to the office and turned it up so she could hear. At first she was pissed that I wouldn't take her in there to watch "disney monster rides" I held my ground and at the same time held a juice cup full of Gatoraid in front of her. Finally she couldn't stand it any longer. She took a sip of gator aid and sprinted into the office. It was then that my masterful plan sprung into action. I let the first few minutes of Mickey Mouse Club play on youtube, and then paused it. "uh ohhh...must be broken, if you take another sip of juice it might work?" She promptly took another sip. It was then that I knew I had her! Using Pavlov's theory, I paused the youtube selection of her choice until she took a drink. After 2 hours of strait mickey mouse club, haunted mansion footage, pirates of the carribean ride, we drank 2 glasses of Gatoraid! Needless to say it was a bittersweet moment for her mother who had spent the ENTIRE day bribing her with every thing possible to drink, not realizing that a simple click of the mouse M O U S EEEEE would fix the problem! Last night Jada pulled out her IV. So its a good thing we have Youtube! Today she is doing much better!

Going home today...

2008-07-07T10:09:00.001-07:00

We have received permission to go home! However we do need to keep the IV in. The plan is to give her IV fluids at night time when she is sleeping. Hoping that she will get over the knowledge that she will be "rescued" when she doesn't drink enough fluids. We will try and boost her hydration during the day time. If she pulls the IV, or it clots we will need to go back into the ER and have it re-placed.

Still going......

2008-07-07T06:25:00.000-07:00

Well Jada Rose is STILL in the ICS unit at PCMC. Little munch kin just wont take to drinking! We need someone who can teach this girl how to drink! "Paging Dr. Chad Nestman..." ;-)

Last night we were bribing her to drink some juice. Her favorite thing to do is go for a wagon ride. Or has her Oregonian mother puts it "Weigh-gon". However those rides are now few and far between because in order for her to go for a ride in her "weigh-gon" she must drink some juice! Last night she enjoyed a bath, and several movies starting with Chip-n-Dale (oldies), Mickey Mouse(oldies), Disney's Haunted Mansion "Disney Monster Ride", Bugs Life...and I lost track at that point. She had eaten a Popsicle half a bananna, and some blueberry muffins that her Grandma Dawny brought up.

Happy Birthday yesterday to three important people in Jada's life...

1. Gramma Rose
2. Uncle Roger
3. Bampa Nolan

Hopefully today she will come home. It is possible that they will send her home on an IV. We are also decreasing her Lortab considerably. Will update again later today.

NOPE!

2008-07-05T22:39:00.000-07:00

Were staying the night...:(

Jada didn't show enough improvement with two rounds of IV fluids, so they want to keep her hooked up over the night and see how she is in the morning..."wonder if she is saying to herself? "dang daddy wasn't kidding when he said I would come back to the hospital if I didn't drink my juice."

Hopefully just a quick trip to the ER...

2008-07-05T15:56:00.001-07:00

Jada still isn't eating or drinking as we would like. Today she has continued to be more lethargic than we anticipated and she started to shake a little bit. We are hoping she is just dehydrated, and needs to have some IV fluids put into her... Will update as information becomes available.

Were home!

2008-07-03T22:24:00.001-07:00

Jada has already had some Mac and Cheese, Ice Cream, an Otter Pop and a few sips of Apple Juice. How nice it is to have my little princess home again! We had a message on our phone from the hospital when we arrived home stating again that the preliminary results of the pathology show no reactivity to any lymphoma...but to remember this is just preliminary... yah it sounded better comming from her Doctor at the hospital but were taking this news and clinging on to it! Dr. Book really was very happy with this "preliminary result". We will keep ourselves grounded and know that nothing is official, but we sure do feel 90% better about things.

When I got out of the shower someone was snoozing in my bed!

GOOD NEWS!!!!!!

2008-07-03T16:26:00.001-07:00

Initial results are back from pathology... NO SIGN OF CANCER!!!!!!!!!!!!!!!!!

We want to get the full spectrum back in a week, but the doctors are VERY HAPPY with the initial results.

WE ARE SOOOOOOOOO HAPPY! Lets keep praying for the in depth analysis to show the exact same results. THIS IS GOOOD!!!!

Jada is eating Popsicles right now. Fever is starting to go down... Things are looking good guys! :D

UteFans brought Jada Rose some gifts!

2008-07-03T12:34:00.003-07:00

She's feeling better

2008-07-03T11:17:00.000-07:00

She is back from the chest x-rays (will update when the results are available). She is actually sucking on a sucker right now! We think taking her down on the pain meds helped. Hopefully she will want something to drink in the near future, and perhaps we will be home tonight!

1st set of visitors today were Aunt Loni, and Aunt Teya. They brought Andrea some lunch and provided some much needed visiting time with Jada Rose. Thanks Ladies! Andrea dropped the ball because she was supposed to be getting pictures of her visitors. Were not as aware of our surroundings as Rob and Angel. So sorry ladies for not getting some much deserved lens time!

2nd set of visitors is going to be from Utefans. Chris (webmonkey) and Kim (CrimsonKim) are planning on stopping bye Jada's room this afternoon sometime. Wish I could be there, but hey my better half is there (Andrea), as well as any and all genetic superiority (Jada Rose) so its all the same right? Still wish I could have been there! Hopefully Andrea will come through on these photo's?

Chest X-ray

2008-07-03T07:05:00.000-07:00

Were a little bit worried about Jada Rose, because she still isn't eating or drinking, and holding a temp of 102. They want to run a chest X-ray to rule out any sign of pneumonia, or mono. We are keeping our fingers crossed that some results from the pathology will be available today. HOPEFULLY Jada will be able to go home this evening if the X-rays are negative, and she drinks a little bit. On a brighter note Jada did sleep quite well last night. So perhaps the extra sleep will give her a boost of energy and push her past this.

The plan for tonight...

2008-07-02T21:26:00.000-07:00

Jada Rose still will have nothing to do with food or water :( Initially they increased her pain meds hoping it would sooth her throat making her want food. NOPE all we ended up with was an extremely slow, cranky, sleepy girl (disturbing to anyone who knows Jada Rose's personality). She also has a temp that is hovering around 102. SO they are reducing her pain meds, and slowing down her IV fluids for the next 6 hours to hopefully increase her desire to drink. She has a WICKED rash that seems to be flared by heat...so when she is running a temp of 102 you can imagine the boils she is developing all over her body. They show up and disappear every hour or so. They sure look uncomfortable. We really hope it has to do with the EBV and they will stop soon.

As far as the pathology results for her lymp... We are trying to keep calm and wait it out. Some may identify with a sports analogy: Think of that feeling you get when the television goes to a commercial break just as the Utes are about to start their second overtime against byu...Well thats basically how we feel 24/7 right now.

I have to work early in the morning and came home to get some sleep as well as feed our dogs. For the second night in a row they were less then thrilled to see just me. I was so bummed out, and apologized to them like 3 times while I was feeding them and giving them their nightly treat. So I sat at our desk and watched this video several times praying that my dogs would get their best friend back soon. And keep her back for a LOOOOONG TIME!

Another night at PCMC...

2008-07-02T16:31:00.000-07:00

Jada Rose is being very stubborn about not wanting to eat or drink. She is also running a temp of 101.5. So it is pretty much a guarantee that we will be staying at least another night.

Still no preliminary results on the pathology of her lymph. Dr. Book is pretty busy but should be stopping by this evening some time.

On the lighter side of this situation I must bring up "the Breath". SHEEEEESH! The surgeon warned us that she would have bad breath from the healing wounds in her throat but wooooaaaa nelly! Dang good thing this little girl is so cute, because her atmospheric aroma is slightly less desirable.

Lets talk about the Utes for a moment

2008-07-02T09:39:00.000-07:00

Many are aware of my almost sickening addiction to Utah Athletics, namely Utah Football. A brief look into Jada's website would lend a fair amount of insight as to why at this point I look to sports, and football for some extra guidance, support, and motivation. Yesterday there was an article in Deseret News about Brian Johnson (Utes Starting QB). He said some things regarding his trials that touched me. He has had several injuries that have put a major strain on his college career thus far, and this was a quote from him yesterday

"We've had challenges and we've dealt with them. It's just a matter of coming out, going to work everyday and trying to get better — realizing that you're not the only one who has challenges to deal with," Johnson said. "Things could have been a lot worse. You've got to play with the hand that was dealt and make the most of it."

"Things don't always happen perfectly," Johnson said. "But you find a way to make do with what you have and make the most of each moment."

I find a certain amount of strength in this, and pray that over the next few days I can commit or rather re-commit to have the same attitude with any challenges that may or may not befall my sweet family.

I spend a considerable amount of time on a website called Utefans.net Many many people there have followed Jada Rose and offered their time, prayers, and thoughts to her of which I am forever grateful. I clued them into the seriousness of yesterdays surgery or rather the pending results of the surgery, and received an unbelievable outpouring of concern and support from them! It is so cool to see people who for the most part are assembled as a group to support an otherwise trivial passion in comparison to life's true treasures, bond together and offer up their time, thoughts, and prayers for my little girl. Yesterday while we were being delayed for surgery the owner of Utefans (Chris) showed up in the hallway of PCMC just to check on us. He listened to me ramble on about Jada's condition, and my hopes, and fears. Then said he would like to send some flowers or something up to Jada. I told him we could not have flowers because of her immune system and said if he wanted to bring something to Jada Rose I would be fine with that. But assured him it was not necessary as his thoughts and prayers were enough. Well he assembled this group of people on Utefans and raised an unbelievable amount of cash to buy Jada Rose a REALLY COOL GIFT!!! I am completely taken aback, flattered, humbled, and so appreciative not only the contributions for their monetary value, although Jada I'm sure will quake with excitement with whatever gift she receives from these wonderful people, but also the representation of support, well wishing, prayers, and good vibes that each of those acts of kindness shows us.

We as fans gather in our prospective stadiums, family rooms, and tailgates to support a team that operates on their own talents and skills, yet somehow we believe that our presence and support makes a difference. We believe that we are a part of the team that is playing on the field. To those of you who are supporting us, Utefans, family, friends, I want you to know as fans of Jada Rose that you have, and are making a difference! Thank you so much! Go Utes, Go Jada Rose!

Feeling Yucky!

2008-07-02T07:39:00.000-07:00

Last night did not go well for Jada Rose, she was agitated all night. Periodically taking a 30 min to 45 minute nap. She does not want to eat or drink anything right now cuz its "ouuiee". We know this will get better though. Having been through my share of cranial facial surgeries I know at the time it sucks, but soon it subsides as the healing progresses. We are just trying to comfort her right now.

No results from pathology as of yet (we didn't expect any this soon). But because the pending results are our main concern, it is at the forefront of our thoughts. We are going to attempt a few tricks at getting her fluid input up to par. She has received several doses of Morphine throughout the night and this morning. I am sure those will taper off very soon. We are still hopeful that we can go home sometime this afternoon or evening. However if her fluid input does not increase, we will likely be here another night....ahhh PCMC, The Place You Hate to Love!

Surgery is done....

2008-07-01T17:16:00.000-07:00

Here is what we know.

Jada came through the surgery ok.

Both tonsils are out.

Both adenoids are out.

One lymph node is out.

Adenoids were HUGE!!

Tonsils were HUGE!!

We have no clue what the results are of the pathology.

Unfortunately with the holiday weekend we may not have any news until Monday :(

Jada will be staying in the ICS unit overnight.

It's so difficult to read doctors. You look for any sign in their communication knowing that they usually will not tell you a lot of information until it is factual. When the doc got up from telling us how the surgery went he said "Hopefully this will turn out to be a kid with an infection who has really big adenoids, and tonsils"...Then he paused and as he walked away he said "But, they were HUGE". That last comment scares us! Thank you for your thoughts and prayers, we will keep updating.

Jada has been in for 1 hr. We have been in the waiting room. No news yet.

2008-07-01T16:54:00.000-07:00

Delayed...

2008-07-01T14:48:00.000-07:00

The surgery has been delayed until 5 pm. Jada Rose is playing in the waiting room SHE IS "VERY HUNGRY". Will update after she goes in.

1:30 PM

2008-07-01T06:59:00.000-07:00

Today Jada Rose goes in for surgery at 1:30 pm. She is currently on liquids only, and at 10:00 am will be NPO. We found out that Jada Rose will likely go strait from the OR to the ICS for recovery.

Surgery Tomorrow...

2008-06-30T11:04:00.000-07:00

I'm trying to keep my mind off of the Operation tomorrow. Unfortunately we won't even know the results of the biopsy for at least a week! They will have the initial analysis within 24 hours, but the final say will take about a week. This is gonna be a long week!!! Today we are fasting for Jada Rose and her health. In addition, we are asking others to include her in your prayers.

On a lighter note Jada is feeling pretty good. She still gets a horrible rash several times throughout the day :( But seems pretty happy. On Sunday we went to the first hour of Church and then came home. Andrea stayed for the remaining two hours while Jada and I read some books, watched cartoons, and took a nap. Below are some photo's of Jada when we first got home from church.

Plans for this weekend...

2008-06-27T09:53:00.000-07:00

We are planning on taking Jada Rose to Lagoon tomorrow since cousins and friends will be going. Jada wont be able to go into large groups or engage in stressful activities for about two weeks so we are going to try our best and have an EXTRA FUN weekend! Hopefully we can get some pictures up on here again!

Operation on Tuesday...

2008-06-26T09:52:00.000-07:00

We saw the ENT Doctor today and Jada will have her tonsils and adenoids removed on Tuesday. Because all of her neck lymphs are enlarged they pose a considerable risk to PTLD (Cancer), the right front lymph is the largest, and it will either be biopsied or removed. This requires a small incision to be made under her chin on the neck. There is a slight risk for possible nerve damage due to the incision, so more O.R. time is needed. Jada will be in the PICU at least overnight. We will know the exact time of the surgery on Monday.

Operation to be scheduled today

2008-06-26T06:15:00.000-07:00

At 9:00am Jada will be seeing an ear, nose and throat doctor. At that time they will notify us of the exact date and time of her next operation. It is anticipated that it will be within the next week. I will have more information at that time. Thanks for checking in.

We attempted to do family pictures yesterday and Jada was in a less then cooperative mood, she also broke out in a really bad rash, and the mosquito's were swarming! So we took a few pictures, and rescheduled on Monday. On the way home we stopped at Olive Garden

Definite Cause for Concern...

2008-06-24T19:40:00.000-07:00

The CT scans came back and Jada's lymph nodes in her throat both front and back are enlarged. Its concerning enough to Dr. Book that surgery is being scheduled within days to remove the enlarged lymph nodes and have them biopsied to see if PTLD (Cancer) is present.

CT scans this morning

2008-06-24T06:56:00.000-07:00

At 9 am this morning Jada Rose will be having some CT scans done to hopefully detect any possible signs of PTLD (Cancer). She will be sedated for 20 minutes. We will update as soon as she has come out and we are aware of any results.

Last night Jada Rose slept in her "Big Girl Bed" ALL NIGHT! We re-modeled her room using her favorite color (purple). Photos/video coming soon.

We saw the Doc yesterday...

2008-06-20T07:53:00.000-07:00

First off Jada's Labs:

Her white blood cell count was up: GOOD

Her Platelet count was up: GOOD

Her Liver numbers were down: GOOD

We don't yet know her prograf level (immune suppressant)

We don't yet know her EBV level

Jada's Spleen was a bit enlarged: Not good

Jada still has a persistent rash throughout the day: Not Good

Her Tonsils are HUGE! Not Good

Basically Dr Book said that although we hope Jada would not contract EBV, it is something that would have eventually happened. It is possible that her new Liver had some EBV in it that was dormant until now. Its possible she caught it from one of us. Dr. Book said that pretty much everyone has or will get EBV throughout their lives. But your body will identify it and keep it at a relatively dormant level.

Dr. Book said many of her symptoms are indicative of EBV in transplant patients. We are to watch for any lumps or lesions. If EBV gets out of control it will cause a very nasty cancer. EBV can live in the tonsils. Therefore Jada is being scheduled to have her tonsils removed in the next two weeks. Also as a precautionary measure Jada will be undergoing several ct scans on her body to make sure her there are no Lymph irregularities.

Although this is not favorable for Jada as a whole, Andrea and I felt MUCH better coming out of the doctors office yesterday. The Liver Team at PCMC is FANTASTIC. We completely trust their opinion and judgment regarding Jada Rose. Dr. Linda Book is a miracle worker and frankly it is a treat just to hear her speak about pediatric gastrointestinal topics. She looked us both in our eyes and said "guys I know that you are nervous, but I'm not nervous yet. We knew this would eventually be an issue. And you know me well enough that if I were nervous, I would tell you." That was very comforting for us to hear.

Shannon was one of the nurses who informed Andrea that we were getting a liver transplant two years ago. She was working yesterday. We love her! She has been such a help to us as her own son who is now a healthy young man has BA and subsequently a liver transplant. Whenever we have something new happen with Jada we always ask Shannon "so did you go through this with your son?" Invariably that answer is always "YES!" then she tells us how it was for her, and how she got through it. VERY helpful! So obviously we turned to her yesterday and said "So Shannon did you deal with this?" She got that "you better believe it" look on her face and said " YES WE DID!"And it turned out fine. Thanks Shannon WE LOVE YOU!

We will update as soon as we find out the dates for the CT scans and Tonsillectomy.

Such a BIG GIRL!!!

2008-06-19T08:21:00.001-07:00

This morning Jada Rose had her labs. She did not cry AT ALL! Wow what a big girl! Seriously I think I cried when I had shots until I was like 8 or 9! Sure is a brave little munch kin! Patrick and Wanda (In PCMC LAB) were so impressed they gave her TWO toys! She got a Play Dow Owl Stamper, and a Choo Choo pencil!

Quick update:

2008-06-19T07:09:00.000-07:00

Labs this morning.

Dr Appt this afternoon.

EBV results wont be back for 3-4 days.

Jada Rose is running at 3/4 impulse power.

But still laughs and jokes at any opportunity.

We will update after meeting with Dr. Book this afternoon.

Some comforting research...

2008-06-17T12:37:00.000-07:00

As I have been reading anything I can find about EBV today I have noticed there are many many transplant patients who are EBV positive. For the most part their success comes from anti-biotic and lowering prograf. Therefore, I am just going to leave it at that for now! Apparently EBV can live in the tonsils so having tonsils taken out might even help? I dunno. It appears that my initial scale below is perhaps a little too steep. After spending time on LiverFamilies.org and reading about others battles with EBV early detection is KEY! We have early detection...I hope. So hopefully it is enough to give us the key to success I have been reading about the last few hours. The reality of that scale is likely wrong in Jada's case. I'll hope and pray that it is.

The Plan (for now)

2008-06-17T11:03:00.000-07:00

Basically the most disturbing thing about EBV is that it can turn into (cause) a nasty cancer called PTLD. Look up PTLD online if you want to get depressed 58% of kids who get it don't live. The crappy thing is its difficult to detect. They will watch her labs closely. One sign of the "looming danger" of PTLD is the EBV count. Now from what I have read with other cases of transplant patients, this is the scale that seems to fit. This scale is in no way official but rather the pulse I get from others when their kids are being monitored with EBV.

EBV value = PTLD Danger

50-400 = Kind of scary but constant monitoring is needed

400-1000 = High alert

1000-4000 = Scary High Alert

4000-6000 = Dark Clouds are on the horizon

6000-20,000 PTLD is next to eminent

Jada Rose is at 6000

I put 20,000 out there because the Liver Clinic said they have kids who reach this level and that is when it gets stormy. Now as I stated above PTLD is diagnosed not by the EBV value but by testing separate strains of white blood cells.

So for The Plan:

We are administering anti-viral meds and taking her immunosuppresant way down. Hoping that her body will fight the EBV. Remember that for the sake of her liver, fighting is not a good thing. We don't want it to get attacked in this war we are in effect starting.

In two weeks the plan is to re-test her EBV level. From there if it is down, then we can breath a little bit easier and monitor the EBV for the rest of her life. If it is up...well lets just not talk about that right now ok?

EBV......$h# !

2008-06-16T12:13:00.000-07:00

I'm at work and seriously do not want people to see my eyes right now so I am going to update whomever reads this with some shitty news we got today. Jada Rose has EBV. That is Epstein Barr Virus. This is a pretty bad thing...manageable, but bad. LiverFamilies.org had a post regarding it and it explains it better than I do...

EBV (Epstein Barr Virus) is a herpes virus; it's probably the MOST common virus in humans. Many adults will have copies of this virus in them, and not even know it. If you've ever had mono, you've got EBV copies.The reason EBV is so dangerous in post-transplant patients is because most immune-suprressive drugs (like Prograf) suppress the T-cells in the body. Suppression of these T-cells can cause the EBV to replicate uncontrollably in the body. The most typical EBV copies are attached to your B-cells, and suppression of your natural killer cells and cytotoxic cells (both T-cells) can cause these B-cells to replicate over and over, causing a high EBV titer.

This over-production of the B-cells is known as post-transplant lymphoproliferative disorder. Lympho = B-cell; proliferative = over-production (in layman's terms!). There are a couple of types of PTLD, but the distinction is usually not made as far as I understand.

Treatment usually ranges from lowering/dropping immune-suppressive therapy to allow the T-cells room to fight, to adding an anti-viral to try to combat the virus cells, to chemotherapy to suppress the tumors and the B-cell population.

So yah this pretty much sucks! Jada will have this for the rest of her life, and we will likely be fighting it for as long. EBV can lead to tumors, lesions, and cancer all pretty scary stuff. My poor sisters called me and tried to talk to me but I have some sort of defense mechanism that causes me to have a flat affect when I try to explain it. I can type this info, but the emotion of such thoughts and possiblities comming out of my mouth is simply too much right now...sorry Bird and Kat.

Perhaps the most difficult thing is the harsh reality of our situation: Jada Rose is a liver transplant recipient. We were told that a liver transplant was not a cure but rather trading one set of problems for a whole new set of problems. On the positive side, this CAN be managed. Its going to be a lot of work but we are capable of dealing with this.

ps. For the second year in a row Fathers Day was absolutely euphoric for me. I LOVE THIS LITTLE GIRL SO MUCH!

Post Labs/ Zoo adventure (Monday)

2008-06-11T08:03:00.001-07:00

LOOOOoonnng post!

2008-06-09T07:45:00.000-07:00

BREAKING NEWS!

First and Foremost JADA ROSE WENT POTTY IN A "BIG GIRL POTTY YESTERDAY!" We were very excited. We haven't been pushing her very hard to go potty in the toilette. So yesterday when she asked to potty? Andrea was somewhat surprised. She set her on the toilette and the rest is history!

HEALTH CONCERN UPDATE

A few weeks ago we were somewhat concerned about Jada's platelet count. Today they are running some more labs to see if the count is still low. Apparently normal is 150,000 or higher. Jada was at 130,000. You don't worry until it is well below 100,000. But they are watching it. Also we have been increasing Jada's dose on her immune suppressants. :( She is now at 90 ml, up from 80 ml. Overall however, Jada is very healthy!

REGARDING OUR LAGOON INFATUATION

I need to make an apology for all the Lagoon stuff. I realized I may have a slight problem when I asked Teya to watch Jada's Lagoon Video last week. Teya's first response was "it was...LOOOOOng" It occurred to me that this might not be as big a deal to others as it is to us. So please allow me to explain our obvious Lagoon infatuation: Throughout the week I am working 15+ hours a day, and when I do see Jada in the late evening her one request is "MONSTER RIDES?" So Saturday evenings we jump in the car and spend 3-4 hours at Lagoon. It is the highlight of the week for both of us! If you are sick of hearing about Lagoon you may want to stop reading now. But I need to give you a fair warning: If you see Jada and want to talk to her? She will almost assuredly want to talk about "Monster Rides".

Up until now Jada has only been on a ride by herself once. That was a car ride and she was in tears by the time it came back around. I have been begging Teya and Loni to get lil Troy, and Kit out with us so Jada would have a co-pilot and could ride the airplanes, the whales, spaceships, helicopters etc. This last Saturday Jada saw a ride that had elephants, dragons, and ladybugs flying in a circle. She turned my head and said "Ride?" I told her she would have to ride it all by her self because daddy was too big to ride on it with her. She replied "By Self?" then ran into the line (without me) :( So, over the next several hours I turned into one of those parents that I used to feel sorry for,leaning against the gate making faces and cheering on my kid as though I was at a Football game. The purpose of my cheering? My kid figured out how to pull a stick towards her, causing her "plane" to soar into the air...

Heres a little tidbit of information for anyone who might read this. Lagoon season pass costs like $79. IHC employees are $39 according to Teya. We have already gone 8 times! If you live even remotely close to Lagoon it is an extremely motivating tool when devising rewards and penalties for behavior. For instance most tantrums can be avoided with Jada Rose by simply saying the words "Good Girls get to go ride on Monster Rides"...Well worth the money in my opinion. Now there are some pressing issues for people who are germ-a-phobes like us. As many may remember the Lagoon crowd is not as hygienically educated as many of us would like. Here is a list of precautions we take. I know that most people don't have to deal with avoiding germs like we do, but hey blogs are for narcissistic expression, so humor me as if I was giving advice that might actually be useful to "normal people".

1.We NEVER NEVER NEVER go near Lagoon a Beach. YUCK! Can you say Crypto-sporidium cesspool?

2.The other obstacle is avoiding face to face germs. I find the best way to avoid this is putting your little one on your shoulders. This keeps them out of the faces of other people coughing and hacking. As well as providing an extremely effective upper back and shoulder workout! Just be sure to duck several inches lower for some of those low hanging trees! Especially if your name is Dan Briggs or Craigy Chilton!

3. Take a package of sani-wipes and wipe down each ride. It only takes a split second, and when you think of the sticky hands that have been touching that handle/bar all day...ewwww.

4. Sunscreen Sunscreen Sunscreen!

5. If you are just taking one child, and don't want to worry about a stroller. Park at the northern end of the main parking lot next to the trees. That way you don't need to haul a diaper bag around all day and when "the moment" comes that you need it? You know exactly where you parked. I found that by the time I grabbed the diaper bag out of the locker, cleaned the bathroom space, and changed the diaper, I could have just walked to the car and taken care of it in half the time.

LAGOON!!!....again

2008-06-03T19:51:00.000-07:00

A Good Day!

2008-05-25T15:51:00.000-07:00

The Labs turned out fine...Must have been dehydrated or something because Jada was clear of infections, and viruses.

Saturday morning Jada Rose and I watched Lion King (I found a DVD on E-bay for $14! SCORE!) All week long Jada asks "monster ride?" Meaning she wants to go to Lagoon. All week I promised her we would go on Saturday. Saturday morning she asked and finally got the answer she was looking for! At 10am we finished Lion King and then packed up and went to Lagoon! For some reason Jada LOVES the haunted houses. Her Mom is scared to death of anything "scary"! So Jada must get this from me? Between "monster rides" we will stop at the Merry Go Round. There is a Golden Retriever that Jada LOVES to ride on! It is very popular so you have to make a sprint for it! All day we tried to get on and finally the last ride of the day we made it! Jada calls it Tahoe-Wasatch. She knows it looks like both of our dogs but can't pin the name on just one of them so names the dog both.

Up until this week Jada has been a little timid on the faster rides such as Puff, and the "boat ride". But for some reason this week she overcame it and went ballistic! There are two rides called Dinosaur Drop and Lady Bug Bop. Both rides technically Jada is too short to ride on, but I noticed they were letting on kids that were very similar to her height. We tried and succeeded! This ride takes you up in the air and drops you several times. Its like a miniature version of the Stratosphere in Las Vegas. At my last count we rode Dinosaur Drop 13 times, Lady Bug Bop 10 times, the Boat Ride 4 times, and Puff 3 times. How many times did we ride "Monster Ride"? I have no clue but it dwarfed the other rides! So basically I am STOKED to get this little girl to Disneyland! And am extremely pleased that she enjoys the feeling of raw adrenaline running through her veins!

Back when we used to do a lot of water skiing at Lake Powell I remember waiting for those magical moments when the lake was glass, the sun was setting, and we were the only boat on the lake! I recall having 2 or 3 of those moments every summer when everything was perfect! Thanks to Jada Rose, I get 2 or 3 of those moments every week! So for those who saw last weeks photo's of Lagoon and are wondering why I am putting more up from yesterday? Its because these photo's represent yet another day of PERFECT MOMENTS!

a CRAPPY lab value...

2008-05-23T11:34:00.000-07:00

Yesterday Jada Rose went in to get some labs done. Today the liver clinic called and said her platelet level was really low..."CRAP!" Among the possible causes are

1. Dehydration.

2. CMV-or other virus.

3. Blockage.

#'s 2 and 3 are the scary ones. She gets her labs done in the morning so it is possible she was a bit dehydrated. She is getting another lab done even as I write this to check for platelets, and CMV. At 2 pm she is getting an ultrasound done to check for any blockage.

#2 Is a bit of a reality check for me. As the flu season ends and we start enjoying normal summer time stuff I admittedly get a little more relaxed and less germophobic. Hopefully this crappy lab value will be nothing more than a subtle reminder for us to help Jada Rose avoid coughs, sniffles, and other potentially "germy" environments.

As far as the reasoning for such aggressive tests, Dr. Book has a really good track record at locating CMV in her transplant patients from an early onset. Hopefully if (Heaven Help Us) it is CMV we can use the early response to fight it. CMV is VERY VERY VERY bad in people with HIV and organ transplants.

7:36 pm- Fortunatly the ultrasound came back with no irregularities. However the CMV results will not be available until tomorrow (Saturday). I have assured Jada Rose that our Lagoon Day will not be affected by the lab results tomorrow.

HINT: Two ways to watch the below videos...

2008-05-22T05:35:00.000-07:00

1.When watching the video's below, you can avoid stoppage if you start it then pause allowing a few minutes for the video to fully load.

2. If you have Real Player, a tab will pop up above the upper right corner. Click on that and you can download the video.

Charlie Steps Part 1

2008-05-22T05:32:00.000-07:00

Charlie Steps PART 2

2008-05-22T05:24:00.001-07:00

Busy Saturday

2008-05-18T09:12:00.000-07:00

1. Walked in race for Charlie Cooper
2. Helped Grandma Dawny in her yard.
3. Went to Lagoon

Craigy, and Emily's Wedding

2008-05-12T12:25:00.000-07:00

Jada was one of the "Flower Girls" at Craig and Emily's wedding this past week. Dan had Aunt Claire's Camera and took some great photo's of the event. There are other ones taken by the photographer but we have not seen those yet. Here are a few of the photo's that Dan took...

Here is a slide show Aunt Loni put together that can also be viewed on Cousin Kits Blog.

Play Date!

2008-05-07T05:24:00.000-07:00

Andrea, Jada, Cousin Isaak, and Aunt Tracy went to the Zoo together today. Jada is getting very proficient at identifying the Zoo animals. She still suffers from Zoo/Lagoon co morbidity. She believes they are one in the same, and cant seem to figure out why "Puff", and "Monster Rides" (Dracula's Castle, Terror Ride) magically disappear or re-appear on any given day? I'm sure she'll eventually catch on.

Andrea reported that Isaak (Son of Scott & Tracy, Scott is Jada's Dad's cousin) maintained a scholarly approach to the various animals taking time to inspect, monitor, and re-inspect each individual animal. Apparently its not out of the ordinary for Isaak to spend 40-45 minutes studying the just the elephants! All the while Jada Rose was more of a "Zoo Trick or Treater" rushing to each animal pausing only long enough to identify that particular animal, and promptly moving on to the next.

After the Zoo, Cousin Kit came over to enjoy a nap time retreat in the highly coveted Ute Room napping corner (Jada's dad wishes he was napping there right now!). Before the nap, Jada enjoyed entertaining cousin Kit by playing "at her level" Because of Jada's Liver transplant she rarely ever played on her tummy in her pre-walking days, so actually this was probably a fairly new experience for Jada Rose. It was fun to see Jada start to take enjoyment out of spending time with her cousin Kit. Chances are this alliance will haunt Cousin Troy in the coming years. But thats where he and his Uncle Troy will come together as the Trojans they are, and quell any attempted female insurrections!

Jada Rose- "Mmmmmm Juuuuiiiccce!"

Kit-"Mmmmmm photo op!"

Jada Rose- "here you need more pink, try this."

Kit-"Common Jada we both know who my mother is!"

Jada Rose-"See how giving I am?"

Kit-"Gee thanks Jada...your a regular Mother Theresa! Separate with the juice, and I might be impressed"

A Moral Dilema Averted

2008-05-06T07:20:00.000-07:00

For me, this is the off season. It can be desperately boring. I have a hard time getting excited about the singular baseball games with 5,678 of them still to be played. Soccer is...well...I enjoy watching my wife play it but consider myself to be FAR from being a fan of the game. Now the NBA playoffs...Ahh thank you Jazz for providing several moments of transition on the way to Football Season.

-A Moral Dilemma Averted-

Jada Rose gets energized when she hears and sees me yelling and pointing to the screen. When she hears me screaming at the TV, She will come running into the room yelling GO GO GO! Formerly she was used to looking up at the screen and seeing #6 of The Utes Rumbling and Tumbling for a 1st down. However, this time there is noticeably some confusion on her face as to why I am so enthusiastic about a "blue" team. Her eyebrows drop, her mouth frowns and she glares at me as if to say "how could you?" I kneel down and point to the screen "Sweetie, that's UTAH...Utah Jazz" she is still confused, and doesn't believe me, but soon the synapse connects, the light turns on, her dimples again accentuate and she starts jumping up and down. Okur hits a three and I jump out of the chair! She yells GO GO GO with excitement then looks to me for approval and asking permission "UTAH?" I reply "thats right sweetheart, UTAH!"

So thank you Jazz for helping me bridge two aspects in my life to the University of Utah, in both an off season segway, and helping to alleviate an obvious moral dilemma by allowing me to teach my child that its ok to cheer for a blue uniform as long as you still say "GO UTAH!!!"

Below are Photo's from Sunday Dinner at Bob and Claire's. We were celebrating Craigy's graduation from...the name of the school escapes me I think it is some Academy down south? As well as his engagement to the Beautiful Emily Stringham!

The ZOO!

2008-04-30T05:58:00.000-07:00

Yesterday Andrea was resting and had some errands to run so Jada and I called up Teya, lil Troy, and Kit to go to the Zoo! Jada was so excited to go she could hardly contain herself! I am SOOOOO glad Teya took some pictures of our trip. Check out Troy's blog for some photo's with hilarious commentary.

In the meantime I am starting a random questionaire to find out what Kit is saying when she gives this look? She is simply the cutest most adorable little kid. But when she gives you this look, it causes you to take a moment of pause and ask yourself "what have I done to evoke such a glare?"

So far this is what I have come up with:

1) "my parents are cuter than you"

2) "I'm hot, your NOT"

3) "I have neither the time nor the inclination to deal with you right now"

4) " I think, therefore I AM"

5) "don't patronize me"

6) "do you realize that every time I blink, you cease to exist?"

7) "seriously!?...I mean...seriously?"

8) "take a picture it'll last longer"

9) "I'm to sexy for this train"

10) "Free Tibet"

Jada's Little Pony's!

2008-04-24T08:53:00.000-07:00

These photo's show a portion of Jada's Pony collection. She is extremely proud of her pony's! When she isn't making sure the Doggies have food, she is lining up her pony's in different locations around the house. The biggest pony is the one she received after "being a big girl" during the "poke"(labs) at PCMC yesterday.

Looking at these photo's I can identify at least 4 pony's that are not present for this particular photo shoot!...I can't believe I am able to identify that!

Waiting for SUMMER!!!

2008-04-23T10:36:00.000-07:00

Ok, I have now moved all our posts from our vacation to the Kauai Blog. I wanted to make this more about Jada Rose (far more beautiful and awe inspiring than any tropical island anyways!) and less about the vacations we took WITHOUT Jada :(. We are desperately hoping that in the near future Jada will be healthy enough to take her on airplanes, and to fun destinations. We simply don't have as much fun without her. I'm sure that someday we will yearn again for that vacation with "grownups" but right now she is getting to be so fun, that we often feel that we are missing out not having her around us! If one dream could come true it would be that Jada could visit Lake Powell and enjoy it as a normal kid. Right now it simply is not an option due to the amount of bacteria living in that lake and her immune system being compromised.

Unfortunately this summer Jada was not approved to go to swimming pools unless they have been "shocked" for at least 3 days prior to her entering it with no other children swimming in it...should I use this opportunity to rant about parents taking their sick children to swimming pools???....naaa ;( Jada will still see some H2O activity this summer as Aunt Loni and Uncle Zak have already planned a sprinkler (trampoline) play area using house water so Jada can play in the water with Cousin Troy-dee, and Cousin Kit!

Jada went in to have some blood work done today at PCMC. We have been practicing her face mask skills and decided she was good enough at it to venture to Coop's suite! Hopefully this will lift the little guys spirits as he has had a tough couple of days. After the hospital Jada was entitled to a "treat" she decided to get ANOTHER "My Little Pony" however apparently this isn't such a little pony after all! Check back soon for pics and lab results!

" FOOD DOGGIES ? ! "

2008-04-16T10:01:00.001-07:00

Jada Rose asks this question on average about 20 times a day! A few weeks ago I let her help me feed the dogs. She took over, and basically its the highlight of her day! My intention was to record her on a day when she had her hair done, and was in cute clothes. But that wouldn't be accurate. It usually happens just as it is portrayed below. With mismatched clothes due her lunch or dinner being strewn all over either her pants or shirt. And her once neatly combed curls, after naps, and playing are now blown into the 'Mozart-esque' hair you see before you!

Since Jada Rose took over this task the dogs NEVER go to bed hungry! Its funny how something I considered to be somewhat of a daily chore, is now one of the things I look forward to most when Jada Rose is involved.

This is a Rocking Chair that Jada's Grandpa Nolan made "JUST FOR JADA" It is Beautiful! Thanks Grandpa Nolan!

2008-04-04T10:37:00.001-07:00