update on appointments with rash girl

Maddie is feeling so much better! At the moment, she's sitting on my lap eating a big spoonful of peanut butter. I hesitated to report on her status since it's been changing so frequently these days. The latest fever, which took us to the ER over the weekend, was the onset of Roseola. This Roseola rash (it's #4 and different from the previous 3 rashes) began Wed. afternoon on her tummy and back. That explains the 4 days of high, unexplainable fevers! I've been singing "rash girl, na-na-na-na-na-na-na-na" (the Batman tune), she loves her new theme song :)

As for her appointments this week at Children's...
Nephrology went fine. She was ultra crabby and did not enjoy her renal ultrasound one bit. Her kidney's have grown, measuring 5.6 and 6.5, they are functioning and now she just needs to have a repeat VCUG at 2 yrs. old to determine if she's grown out of the vesicoureteral reflux since you can't tell this with ultrasound. Her
Bacterim has been changed to 2 mls of Furadantin which is a little spendy!

She was also squeezed into Dermatology while we were there and Dr. Sidbury was able to check out the weird rashes she's had. I had pictures of the past ones. His census is that it's viral related, and when she's come down with these bugs (Metapneumovirus, Stomach flu and the onset of Roseola) she's broke out in a rash. She is a skin sensitive kid and it may be her "warning" to us that she's getting sick, I guess that's nice to know. He does think it's something she'll grow out of. We ended up cancelling ophtamology since she was so tired and we wanted to save her for her card. appt.

As for Cardiology, she was a superstar! I was amazed at how big she was during her echo, such a good girl as long as she had books, bubbles and a Baby Einstein movie to distract her! Her echo looked great, although she does have some veno-venous collaterals and a trivial amount of aortic valve regurgitation but it's nothing to stress about. The systemic, working side of her heart (her left) is doing it's job and that's awesome. Her O2 sats were 77% and EKG was normal for her. Dr. Vernon was impressed with how big she is, 21 lbs. 15 oz. and 31 inches in length, measuring in the 25th percentile! She is happy with Maddie's status, gave her an A+ and also a 6 month pass!!! We won't be back for another heart appointment until next year! Wow, what a blessing and huge relief. Our baby girl has come a long way.

Nany is the hero at the doctor's appointments (both of ours!) She's so much help to me, and Maddie just adores her since she always "saves" her after a procedure or test. I'm always the bad guy, holding her down. That's my job, right? I'm glad "NANEEEE", as Maddie likes to yell, is the hero. She deserves it. We also got in a short chat with Mimi and Mia! She is such an amazing little thing, super cute and smiley just like her sweet momma. We always love seeing them and lucked out having our cardiology appointments the same day. Maddie's not-so-favorite part, the EKG. It is not painful, just annoying.
Here's the big girl during her 40 minute echo

mystery rash

So Maddie and I took an ER visit late Saturday night to Wenatchee...she was admitted and observed in the hospital's peds wing until late yesterday afternoon. It's a mystery what is causing this rash/fever thingy that she's had off and on.

Remember the mosquito bites + hospital stay the first part of June? Well she's had 2 more bouts with this rash and each time she breaks out, she's itchy, feverish and then ends up with a virus of some sort. Metapnemovirus the first time, a stomach bug the second time and this time only a fever and loose diapers. We thought it was bites originally, now I know it's not. Tuesday morning she was covered with them, itching like crazy, and it's like her body gives us a little forewarning each time she's coming down with something OR she's allergic to something OR she's had this virus 3 times in a row OR it's chicken pox (which she's been immunized against and they're not quite pox like) OR some type of bug or spider, a "cantseeum", as I've been calling it keeps attacking her since another little creature wouldn't be capable of eating her up like this plus she sleeps about 6 feet from our bed OR ... IT'S A MYSTERY. Every doctor and nurse we've seen or talked to in the last month and half has a different take on it but they all agree that it's just weird.

So back to the ER visit, her fever was up to 104 (it had been low grade that day off and on and she hadn't had one yet with this breakout which began on Tuesday) and she was so irritable and fussy. I was thinking a bladder or kidney infection since she hadn't been peeing, or eating well, and the diaper I'd changed was pretty hot so I called Nephrology (her kidney docs) and they wanted her to get right in since she deals with the kidney reflux issue. She'd been off of her antibiotic for 3 days since at a doctor visit on Wednesday, Dr. Hourigan was thinking the Bacterim was causing the rash...like an allergic reaction. In the meantime, a new antibiotic was ordered for her kidney reflux, Nitrofurantoin, but did not get delivered to our local pharmacy by the weekend and wasn't shipped directly to us due to the heat wave we're having. Note: we live in the boondocks so her meds get shipped directly to us or to our little pharmacy here in town. So after waiting in the busy ER for an hour, she was taken back and amazingly, it only took 1 stick to get a peripheral arm vein and she was on her way for blood draws, IV fluids and a round of antibiotic. She was also cathed and urine was cultured since we were leaning towards a UTI, but the initial urine test came back fine and so were her labs. What?!?! So, Maddie is a mystery. This has not been contagious, we're all fine here at home (or immune to it) as well as the cousins and extended family we've been with here and there haven't had it either. It has really come and gone, lasts about 5-7 days then she's healthy and perky and then in the next week or so...it happens again. Could be coincidence or something we just haven't put our finger on yet.

As of now, the Infectious Disease Dept. at Children's is being informed of Maddie's mystery symptoms and hopefully we can get a consult with them at our appointments in Seattle this week. She's seeing the Nephrologist, Cardiologist, Ophtamologist, as well as has an echo and renal ultrasound scheduled, and I'm just praying that this gets resolved as something treatable! I'm sick of her "wearing it out" only to have it come right back again!

Some beach, somewhere...

...the Stewart's hit the beach! Yes folks, a real vacation with my family without any horses or rodeos involved! Lincoln City, Oregon was our destination and great fun we had. It was so nice to get away, spend some relaxing, quality time with each other in a fantastic beach house, eat some great seafood and just let our funny kiddos and Uncle Ryan entertain us all. Thanks mom and dad for a super fun trip!

This is Jace doing his pirate interpretation "Ol' One-Eye, Arrrr" Sharing icecream, yum
Scooters on a hilly driveway was a challenge
We had great kite flying weather...it was always very windy down on the beach
The hot tub was a hit since the ocean was too cold, our little fish still got to swim this way Kylie Rose, Cade & Jace playing in the sand
Maddie eating sand, Jess & Kylie walking in the distance
Ba was the only cowboy on the beach...
Uncle Ryan and Cade at the tide pools full of starfish and little sea creatures
A great way to keep track of your kid...
Nany, Jace & Oggy Doggy bearing the cold ocean waves

5K was a huge hit!!!

(click on the photo collages to enlarge the pictures)

The Run Royal 5K in honor of Miss Maddie and for the Children's Heart Guild was simply...AWESOME! This Summerfest race had the biggest turnout in it's history with over 140 runners, doubling last year's count. Not bad for a little town with a population of 2,000 people! The support and love we've received from this community is immeasurable and the bottom line is, when someone needs help here in Royal, the love and support comes out of the wood works for the cause. We may not have a stop light or a hotel...but we are first class when it comes to service and helping others. We love it here and are proud to raise our kids as 4th generation residents of the Royal Slope. Maddie is such a lucky little girl to have so many love and care about her! Some of the highlights from the day included...three fellow Seattle Children's heart families joined in to run as well (two of them drove over from the westside), Forrest Gump strolled across the basin just in time for the race, my cousins Ashley, Josh and Susie came over from Seattle to run, and so many great friends and family participated as well. THANK YOU for showing up, bright and early to run 3 miles, up that nasty hill and in the heat!!! You all are so great :)
Heart families posing after the run...Our family, Jill & Kate (VSD,ASD), Trent, Susie & Teagan (HLHS), and Wyndi & Izzy (PHACES, IAA, Pacemaker)
Another member of the "zipper club" with a mended heart is Maggie (ASD), with Maddie & Cousin Savanna
For the $10 race entry fee, the participants received a bag with their t-shirt, bottled H2O, Heart Guild brochure and either a key chain or red bracelet that said CHD AWARENESS. Thanks Tonneka (another heart mom) for sending us the extras from your fundraiser!

So...after the final count of entry fees from the race, as well as some very generous donations, the total raised for Children's Heart Research Guild was over $2,100.00! We are just ecstatic over this...our goal was $1000. A special thanks to our cousins and race organizers, Tyler & Ashlee, for offering us this as the charity of choice for Run Royal this year. The Heart Research Guild (click here for the website) is a newly formed organization formed by parents of children with heart defects and raises money for Children's Research Institute, which is the research arm of Seattle Children's Hospital. Our group wanted to keep the funding local so we could have some say in how the money was used, and that it was used well and for its intended purpose. Most organizations that raise funds for pediatric heart research are on the East Coast so having a "local" organization on this side of the country to fund and affiliated with the wonderful hospital that has saved so many is exciting. When your child's future depends on advancements in medical science, like Maddie's does, there is nothing more I'd like to spend my time and energy on. I've also just recently accepted a position with the guild as Event Coordinator...I'm really excited about it and the wheels are turning in planning future fundraising/CHD awareness events. It's right up my ally and with a community like ours, I know success will be in the equation every time! Thanks to everyone who participated and donated to the run...you are MUCH APPRECIATED!!!

We will rock you!

I caught Jace with my I-pod the other day singing along to Queen...soooo c-u-t-e! For your viewing pleasure and Jace's embarrassment in about 10 years, I bring you "Rock you, Rock you!"

The second clip shows a bit of Maddie's sassy self, she really is becoming quite the stinker if her demands are not met. She's now graduated to queen of the house from her princess status, she truly "runs the roost" most of the time around here. Also, check out WHO rides in the babydoll stroller now, so much for the babydolly...

Our 4th of July weekend

Our busy weekend started off by celebrating Nany's birthday with ice cream sundaes and four-wheeler rides, compliments of Jace and Cade...For the fourth, we enjoyed a yummy BBQ, swimming at the pond, playing with cousins and a great fireworks show at Uncle Jerry & Aunt Chriss' place. Martha Stewart has nothing on Chriss, they surely know how to entertain and put on a fun party!

Maddie & her Kylie Rose, they sure are Nany-girls and two peas in a pod these days! Lots of affection and sweetness between these girlies

Cooling off in the pond after a HOT day

Bryan showing the boys his skills on the rope swing! This is as good of a picture I could get of these 3...no one would look at me for the picture!
Maddie with her new favorite friend, Courtney...they bonded after the haircut, don't ya think?!?
Cade double-fisting the sparklers...he's a brave one!
Enjoying the awesome fireworks show, our kids loved it.

Run for CHD

The 5K run benefiting Children's Heart Research Guild and in honor of Miss Maddie is just a week away!!! If you're planning on participating and haven't pre-registered, please do so TODAY. If you'd rather just donate to the cause and skip out on the race, that's awesome too. You can get your registration forms here . The t-shirts are being ordered today so leave me a comment or send me an email on your size and I'll pass it onto the race organizers!

Race details-When: Saturday, July 11th 7am
Where: Royal City's Lion Park
Cost: Pre-registered cost is $10 adults/free kids. Registering the day of the event is $15 adults/$5 kids (come early to register please)
Distance: 5K (3.1 miles) or Kid's 1 mile fun run
For: Children's Heart Research Guild in Seattle, 100% of the entry fee benefits the guild! This money goes towards funding research to advance the diagnoses, treatment, and cure of heart defects and diseases in children.

And just for the record, you don't have to run the 3.1 mile race, I'll be pushing a stroller and plan to walk & socialize along the way! Won't you join us?