Family Talk

We're Still Here!!

2011-11-05T00:13:00.000-07:00

And we are loving life these days. Our busy, crazy life! When I previously discussed my "issues" with Blogger, it was about uploading pictures, and leaving comments on other's blogs. I am not going to take the time to figure that out, so as long as you are okay with text, and no comments on your own blog, WELCOME BACK!!

To say we are busy is a bit of an understatement! Now that Casey is in 1st grade we have nightly homework in 3 subject areas, soccer practice, karate, and play! Casey loves 1st grade, and works very hard at it. He is truly a "boy" in every way, and the fact that he's had 4 open-heart surgeries is amazing, because you could not tell at all right now! We are so amazed, happy, and blessed with what he has been able to overcome in the last year.

Aubrey is now 4. Yep...don't faint like I did! It's amazing how fast the time flies with a child when you don't spend weeks on end in the hospital! She amazes us everyday with how grown-up she wants to be, while still being our little girl. So far we have had to argue over hair, make-up, clothes, shoes, and more! She would make a great lawyer...one with good fashion sense!

Mike and I are busy playing carpool, making school lunches, doing "homework", and saying the phrases, "Time to clean up. Be respectful. Please get along. Make good choices. Less talking and more doing!", over, and over, and over, and over, and OVER again! Lucky for us (and we remind ourselves of this), it just means we are busy having a very normal family life.

And we are even more lucky that you are checking in on us! Heart Hugs to all!

Issues

2011-06-17T23:05:00.000-07:00

ONLY with Blogger I mean! Life has been great. Casey has been so healthy and just finished kindergarten. I can't believe my little boy has lost 8 teeth, and will be a first grader!

As I type this, I now have a 4 year old daughter! We celebrated today with a few friends, all dressed in princess attire who were given Rapunzel hair. It was so fun to see all the little girls play together.

Now that I am off with the kids for Summer Break, my goal was to update the blog with furious speed. However, my laptop is not of the highest quality, and for some reason Blogger just doesn't like my laptop..or vice versa. So...I think the blog will take a sabbatical. Don't be upset...if anyone is even still reading this!

And you can picture me with my foot in my mouth, since I said years ago I would NEVER join Facebook. However, over a year ago I did, and I love it...a lot. So, until Blogger comes back to me, please find me on Facebook at Gina DiBlasio Dyke Heart Hugs Forever!!!

Let's Play Ball!!

2011-04-02T23:52:00.000-07:00

A very exciting and emotional time for me! Not only is my son old enough to play TBall, but he is healthy enough that at this age, I don't even need to tell the team/coaches, etc. about his heart issues! Casey was "drafted" to the Pirates TBall Team. TBall is the way life should be; Everyone gets to play every position, there are no outs, and there is always a snack at the end of each game! Not to mention the fans are the best!!

New Year, New Post

2011-02-25T23:24:00.000-08:00

Am I going to start every post in 2011 by saying I'm sorry that I'm "behind"? How about this? My norm is that I will be at least a month behind. It gives me time to get the pics off the big camera onto the computer, and then give myself the time to sort through them and upload them to the blog!

As soon as the holidays were over, we thought life would return to "normal". However, the older our kids get, the more we realize that every day is busy! Here's the highlights so far of 2011;
1. Casey turned six! How is that possible! Celebrated at school, and with dinner at Chick-Fil-A

2. My cousin Leah and her fabulous cookie company, Cookie Zen came to the Fancy Foods Show in SF, so we got to see her at dinner with her co-workers, and say hello to the sea lions :)

3. Casey started Taekwondo (sp?). He loves it. He has now been chosen to be on the Pirates T-Ball Team...practice to start soon! How amazing is this heart survivor???

4. Aubrey loves preschool, and has found that it's fun to trace her name, and draw people. She got to bring home Clifford the class pet last weekend, and boy he got a workout!

5. Mike and I were lucky enough to be invited to attend the Auction Dinner for Camp Taylor, a heart camp for kids. It was a blast with friends, even if we didn't win the 49er tickets, the chihuahua, the golf package, or anything else we bid on!

6. Casey lost his 3rd tooth last weekend, all by himself while Mike and I were watching a movie. That's the way I like it!

6. We are loving life! Hope you are too!

Day After Xmas

2011-01-18T13:50:00.001-08:00

We were lucky enough to celebrate Christmas twice. Mike's side of the family came over the next day so we could celerate Christmas as well as Uncle Chris' Birthday (the 25th). Casey and Aubrey had no problem summoning the energy for a 3rd round of opening presents!

Aunt Mindy joining in on the Dart Gun Wars

Kids helping Uncle Chris celebrate!

Uncle Chris getting his "payback" from his niece Ashly!

And the war in on!

Wearing whipped cream might be the new Dyke family holiday tradition :)

This dude is tired from the holiday madness!!

Christmas Day 2010

2011-01-18T11:57:00.000-08:00

Our children woke us up when they saw the tree full of presents, but lucky for us, they didn't open any until we all got settled.

Then the craziness begins!
Just what Aubrey asked for, a computer :)

Dogs deserve presents too.

The crazy kids with their parents!

Overjoyed at the homemade BBQ sauce he recieved.

When grandparents and aunts arrive, the second round of gift-opening starts!

New dress-up jewels.

Christmas Eve 2010

2011-01-18T10:46:00.000-08:00

Yes, Christmas was "last year", but if you tune into this blog regularly, you'll know that's how I roll! December 24th started with Mike playing golf, so I took the kids to the zoo. It was a beautiful day and all the animals were out!

Later that night we went to dinner at McKormick and Schmick's

Followed by coming home to get into Xmas jammies...

So they could go out and sprinkle the reindeer food on the lawn...

And then put out goodies for Santa!

Still Thanksgiving

2010-12-30T22:43:00.000-08:00

Uncle Chris and Aunt Gina!!

Uncle Mike is in the game!!

Aubrey is in LOVE with Uncle Chris!

Mom and Dad DiBlasio love the quiet, gentle Moose :)

But it's still fun!

Thanksgiving Part 3

2010-12-30T22:10:00.000-08:00

Aubrey, always the willing participant...

Niece Brittany, welcome back!!!

Who needs pie...this is what Aunt Cara is good at doin'!

Thanksgiving Part 2

2010-12-30T21:00:00.000-08:00

The Clean-Up Crew Ready and Waiting!!

A Table (actually 2) set for 16!!

The good gals!

Our neice Brittany and Rian

Next Up...the whipped cream escapades!!

Thankful Part 1

2010-12-22T00:51:00.000-08:00

We were so lucky this year, that we had more immediate family members in our house on Thanksgiving than ever before. And of course, we couldn't be happier! Since Blogger doesn't like me, these 4 photos are only the start of the fun day!

Aunt Mindy and Cousin Ashly

Casey in his "other costume", tbe Pilgrim

Aubrey was soooo close to falling asleep, right as everyone arrived. But the cutie rallied and charmed them all.

This is the main event!!! We woke up on Thanksgiving to record lows!! We had covered the few plants in question, but also loved that Casey and Aubrey learned new info. The fact that our fountain froze in mid-air was a oncein-a-lifetime thing for us!!

Blog Catch Up

2010-12-19T18:08:00.001-08:00

Yes, it's almost exactly a month later, but here it is! The week before Casey and I were out of school for the Thanksgiving Week, our kindergarten put on the 7th annual Thanksgiving Program and Feast. All kinders were on the stage singing songs and reciting poems. Afterwards, the families were treated to a "feast" made by the kids; cornbread muffins, stuffing, potatoes, and pumpkin pudding.

Although I've been doing this for as long as I've been teaching kindergarten, it sure was cute watching my boy on stage!

One of 3 photos where Casey is practicing his super-cheesy smile.

Now Aubrey is giving us her version...

He might look like the only one who enjoyed it, but I promise that wasn't the case!

Deck the Halls...or the House

2010-12-16T22:42:00.000-08:00

Yep, that's really our house. And that's really a fork-lift helping my hubby put up lights. What started out as a beautiful Winter Saturday in Nor Cal turned into a scene from a Griswald's movie! Mike has been so busy and out of town that he finally had a chance to put up our outdoor decorations. My job was to hang out inside and clean the house for his family to arrive for a b-day party.

He started at 10am. By 12pm our neighbor came over and decided they needed cigars while doing this task. At 1pm I went to the gym. By the time I returned, my husband had gotten "stuck" on the top story because the ladder was too steep and he couldn't get back on it! Then, said male neighbor went over the the hard-working home builders who were working on the lot behind us and convinced them to come over with their forklift in exchange for something my husband makes a living doing. I was only gone for an hour and 15 minutes!

Sure enough, in the early evening, the wonderful men drove the forklift down the street. Mike nd his helper had screws put in and lights hung in a matter of 20 minutes. And NOW, all the men in the neighborhood want to make it an annual event....I fold!

Hold On!!!

2010-12-14T23:20:00.000-08:00

For those of you who still check into this blog, please don't leave. I have 3 more days of school to get through, then 2 weeks at home. So hopefully the blog will be very up to date by 2011!

Halloween 2010

2010-11-22T11:24:00.000-08:00

Now that I have time off for Thanksgiving Break, I can try to catch up on all the fun stuff that has been going on since school started. Here are some pics of Halloween.

If you look closely, the pumpkin is carved into the San Francisco Giants Logo. I'm surprised that the dads actually went trick-or-treating, since the game was on.
Just a portion of the kids on our one little block!

Stirring up the Witches Brew...my specialty.

Casey as Commander Fox, from The Clone Wars

Aubrey's costume was called Rose Princess, which fit perfectly since Rose is her middle name.

At Least It's Somethin'

2010-11-06T22:02:00.001-07:00

Yes, it's November, but the kids just ended swim lessons at the end of October. We are taking a break during the winter months, but we will be back at Starfish Swim School in Rocklin in the Spring. Swim lessons are usually fun and easy for most kids, but until this summer, Casey was terrified of water, and felt he had no control, no confidence, no safety. The very, VERY, kind and patient Teacher Nick worked hard with him and Casey is truly a swimmer now.

We started Aubrey just a month after Casey, and she had no fear at all for awhile. But, depending on which session, she did have a major attitude at time. Teacher Kelli was just amazing with her and I think I could use some lessons from both these teachers in patience when my children are screaming at the top of their lungs! Here are some pics of their better times.

Next up will be fall photos, as soon as I get them loaded onto the computer!

2010-10-10T21:29:00.000-07:00

I can't believe that both my kids are in school! Aubrey started a few weeks back, and I have been wanting to dedicate a post all about her big day. But blogger doesn't always behave, so it's a bit delayed. As you can see from the first picture, Aubrey was upset that mom and Casey left for school before Aubrey's turn. It broke my heart to leave with her so sad, but Casey starts school at 8:15, and even though it's right next door to her preschool, we had to have dad escort her on her big day. She had been excited for weeks, and loved meeting her teacher the week before, since it was Casey's teacher from preschool.

By the time she got into the classroom, she was still pouring on her dramatics. Unsure if she was really ready for her preschool debut...

And of course, the "after" photo, where she proudly displays one of the 3 paintings she made. Since then she has loved every minute of school, and her teacher has commented on how she loves to learn, and is a busy gal. We are so glad she loves to learn, make friends, and listen to her teacher!

Crazy Kids

2010-10-10T21:03:00.000-07:00

The energy level in this house is usually very high! Lately both kids love to dance, but that's not all. Casey enjoys pretending he's a Star Wars character, and has full battles on his own, complete with throwing himself backwards onto the floor. Every once in awhile Aubrey joins in with her lightsaber. That is, when she's not busy climbing and jumping on the furniture. Crazy monkeys! Hopefully these habits won't lead to stitches or casts!

Heartwalk Pride!!

2010-09-26T21:59:00.000-07:00

Last Saturday, our family participated in our 6th Heartwalk for the American Heart Association in Land Park. Casey has grown to love this event for many reasons;

1. His friends are there, friends that have scars like him

2. He loves feeling like he's accomplished "the walk"...this year he wanted to run!

3. The KidZone, which increasingly acknowledges that the youngest humans are also victims of heart problems, and they deserve to have fun too!

4. The enthusiasm, cheering and music, which he might just think is just for him :)!

THANK YOU so much to all that supported him, and continue to support him. It's not just the money he raised, it's also the love and care that you all carry in your eyes, words, and actions that prove you are just as proud of his life as we are!

We will hope and pray that he will participate in the Heartwalk for numerous decades to come!!

He's A Kindergartener!

2010-08-25T21:53:00.000-07:00

Twas the night before Kindergarten
In a house on Sevilla Drive,

A mom's heart was brimming,
swelling with pride.

He's kept on our toes since before he was born
He's battled for life, while our own hearts were torn.

He's struggled, he's fought, and earned every minute,
His passion for life shows he's in it to win it!

And now his next journey takes him through Blue Oaks' doors,
Where he'll make new friends, learn to read, and so much more.

He'll play games, do homework, and be a regular boy,
And nothing in the world could bring us more joy.

We didn't now if he'd make it here, but now we're proud to say,
Casey is a Kindergartener, Hip, hip, HOORAY!!

DENIED!!

2010-08-10T23:25:00.000-07:00

Once again, just wanted to let you know that I stayed up late, thinking of you, and being excited to hear from you. AND, I was very excited to show off some pics from Disneyland. However, Blogger once again caused issues, so I am left to say...We had such a great summer...please believe us! We've had so many computer issues, but The Blogger never seemed to be an issue to de-code:)

Disneyland!

2010-07-25T23:11:00.001-07:00

Yesterday we got home from the happiest place on Earth...Disneyland! We had a great time but I do feel like I need another vacation to recover :)

This was both kids first time at Disneyland, and almost my first. I have only been to Disneyland one time, for about 6 hours, when I was 25 years old! And Mike only went once when he was very, very young and doesn't remember most of it. SO, it was sorta kinda like the first visit for all of us. Very fun.

The kids loved just about everything they did and saw. Aubrey got pretty scared when any character got close to her, unless it was a princess, but she enjoyed seeing all of them from afar.

Casey shocked us by enjoying the BIG rides; in other words, the scary ones! Matterhorn, Thunder Mountain, Space Mountain and more! Of course he shared this excitement with Mike, since rides are SOO not my thing. I was never a fan, but the brain surgery didn't make it more enjoyable! We also got to spend time with a few different friends, although none of it was planned!

The grown-ups enjoyed California Adventure Park a bit more than Disney, but the kids were very happy there too. In all, it was a great trip and we are happy that our family is healthy enough to make the trip and enjoy all the Disney Area had to offer. :)

June???

2010-06-28T01:41:00.000-07:00

Yes, we were here for the month of June. And it was probably the busiest June we've had. My goal is to post each major event as it's own post. I started to do that for my niece's graduation...but Blogger doesn't want to post my pics. So, here's what's in store when it decides to cooperate;

1. Ashly's Graduation: A great weekend that started with a family trip to Yreka, a place I've never been, but where Ashly, her dad, her grandmother, and great grandmother have lived. Oh, and just in case I forget to mention it in the post with pictures...my niece was the VALEDICTORIAN!! And has received a scholarship to UC Davis where she plans to major in biochemistry. Ashly Rocks!

2. The end of another school year for me, and the start of a summer vacation for me and my kids! Except that it started out a little rough. Casey had his adenoids removed, and an ear tube placed on June 15th. Since we are no strangers to the hospital, it was a very low-key and non-stressful event. However, the anesethia docs wanted him kept overnight for observation due to his heart condition. He came through the surgery like a champ, and it was our easiest and shortest hospital stay in his 5 years of life:)

3. And thank goodness, because the day after we came home, our little girl turned THREE! It is hard to believe how fast time has gone, but it is obvious when we look at her sweet face and darling curls that she is no longer a baby! And being the princess that she is, her birthday turned into a weekend party...Tinkerbell visited her on Friday. We celebrated Rylan's 4th B-day on Saturday, then came home for her "family party" at night, with a Rib Cookoff attached thanks to her uncles.

The rest of our summer has finally started, and we are busy with playdates, swim lessons, running errand with mom, and spending time with family! Hopefully there will be pictures to prove all of this SOON!

The Rest of May 2010

2010-05-29T00:11:00.000-07:00

The pictures are random, but so are my thoughts these days, and we juggle sick kids (again!), the last 8 days of teaching, and other crazy stuff around here. Maybe on Summer Break I can be more frequent and chronological!

Casey and I ready for his Mother's Day Performance

Moose soaking up the few rays of sunshine this May.

Casey has started private swim lessons, to ease his fear and move him along a bit quicker. LOTS of progress made in just one month!

Gaining confidence....

Hearts of Hope Picnic at Land Park

Whose kid is this???? We are almost at the point where we need professional advice!

But she looks cute no matter what kind of "hair day" she has :)

Not only is he adorable, but this pic makes the camera worth the money my hubby paid.

The Pictures Say it All!

2010-05-10T16:06:00.000-07:00

We've been busy!!!!

Someone Else's Words...

2010-04-30T23:57:00.000-07:00

Once again, on my "to-do" list I have written, "post pics on blog". However, the emotions I have been feeling the past two days have made me very busy hugging my own kiddos mroe than usual, crying a bit, and remembering to be thankful for every moment I have with my kids, whether ill or well.

Thank you Carey M for posting this poem so I could steal it!!! It is a wonderful reminder of how lucky we are...especially in my time of sadness as some friends of ours are losing their baby heart daughter this weekend. Heart Hugs to all!

***apologies for the unclean "copy and paste" of the poem!

"When I Became a Heart Mother"
One day my world came crashing down,
I'll never be the same.
They told me that my child was sick
I thought, am I to blame?
I don't think I can handle this
I'm really not that strong
It seemed my heart was breaking
As, I'd loved him for so long.
I will not give up on this child
despite your best "advice"
I will give my child a chance
No matter what the price
And I will learn all that I need
to help my child to thrive.
I'll even use that feeding tube
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this
I will not curse our fate.
The feeding pump beeps,(at 3:00 a.m.)
It serves as my reminder
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings
and I run to my sleeping child's bed
I watch him then, for quite awhile
(Bend down and kiss his head)
Then I cry for the parent's whose lives have been broken
And I look to God wondering why?
Oh Lord, I just can't know your ways
No matter how I try
And yet, I trust You hold his life
(and guide us through each day)
My mind says savor each moment he's here
But my heart whispers,"Please let him stay"
From pacing the surgical waiting room
to sitting by his hospital bed
From wishing for a good nights sleep
to learning every med
From wondering will he be alright
to watching him reach out his hands
with every smile, my heart just melts
despite life's harsh demands
For all who see that faded line
I look to them and smile
You see my child is loved so much
I would face any trial
That same scar I trace with my finger
It's the door to his beautiful heart
I never guessed how much I'd love him
Just as YOU loved him right from the start
A heart mom is always a heart mom
Now wise beyond her years
And for those who have angels in heaven
Our hearts share in all of your tears
Everyday I will strive to remember
You chose me for him and no other
And I will embrace that beautiful day
When I became a "heart mother".
~Stephanie Husted

How could anyone have put better words to this life that so many of us lead!?!??!?

Holding Hearts in his Hands

2010-04-18T21:52:00.000-07:00

My goal this weekend was to post pictures of Easter and all the last month. Well, there were many, MANY other things on my list and so that didn't happen. BUT, I have to post how excited I am about a new developent in our "heartworld". I have always used the internet to search for others with Casey's heart defect, Tricuspid Atresia. There is nothing better than seeing others who have had success with his same surgeries. Even better is when I find ADULTS with his defect living fairly normal, healthy lives. As any parent with a heartchild knows, their future is unknown, and we can only hope for the best.

There is one blog I follow..a lovely 20-something named Lauren. She also has Tricuspid Atresia and it is so comforting to hear that she is in college, has a boyfriend, supportive friends, etc. Her blog is to the right of this post, so check it out if you want more info.

But here's the really exciting part. SHE IS MOVING 20 MINUTES AWAY FROM US!!!! She and her boyfriend will be coming out to Cali in about a month, and I could not be more excited! It brings tears to my eyes to know that Casey will get to meet and "be friends" with someone who has the same heart he does! It warms my heart that Iwill have an adult with his heart to ask questions that Casey can't quite answer at this age. It excites me in so many ways I just can't put words to them....and I can't wait to hug her!

iUpdate

2010-04-13T20:54:00.001-07:00

Sorry for such a delay in posts. We have been very busy with many little things. Spring Break ended on a great note, my birthday! I still had the day off, so we celebrated by going to the Cheesecake Factory with the kids for lunch, and then heading to the Apple Store to pick out a new phone! And I must say I am quite addicted to how much information I have at my fingertips, without sitting down at my laptop.
Back to work for me, back to school for Casey, back to daycare for both. As I type this, we finally have sorta-kinda-Spring weather, and we all hope it's here to STAY!! Aubrey gets very upset when she can't go outside to play these days, and keeps talking about wanting to go on a picnic.
Casey gave us a short but strong scare last Friday. A fever that quickly shot up to 104 left him very lethargic and unresponsive. He rarely complains of pain, yet kept saying his arms and legs hurt, and could we "pleeease" take his temperature. A rush to the pediatrician who then called his cardiologist turned into again testing for RSV, strep, Flu, etc. After doses of Tylenol and Motrin in the office his temp went down enough for us to go home, and get him on a different antibiotic for his now double ear infection. Turns out the first one was too weak, since he's been on so many since January. Next up; ear tubes in and adenoids out!!!!

Not A Break from Spring

2010-03-31T23:43:00.000-07:00

Excuse my grumpiness. I have been trying to upload a video to the blog for over an hour, and it wasn't working...so now my grumpy tone will come through!!!

Spring Break has not really been a "break" at all. Not that I am complaining, not at all. We are very lucky to spend this Spring at home, while leading a fairly normal life. However, life does not feel normal at all this past week...

1. Casey got sick over a week ago. We took him to the doctor, and they swabbed him for RSV, gave him antibiotics if his fever jumped, told us to keep up the the albuteral, etc. He had a fever that would come and go.
2. Two days later, my hubby finally goes to the doctor. He has been hurting. At first he thought my car caused him back pain. Then we both thought it was an exercise injury. Then I thought it was a kidney stone. Turns out he was diagnosed with Shingles!! Thankfully, he has had a very mild case is is completely on the mend.
3. Back to Casey...his fever left, but his cough stayed...as well as a big red spot on his eye. Two days after his appointment the lab called and said he tested positive for RSV..the second time this season!!! So we went into quarantine...
4. Except today he wasn't better. He can't hear at all, and keeps asking for us to turn things up and talk louder. Off to the doctor we go. Good thing, because the lab reps read his test wrong, he never had RSV this time!!! Great news! However, he does have an ear infection, so that's where we are now.
5. As for the weather, it could be better. Poor Aubrey keeps asking to play outside, all the time. It can only happen every so often! Instead, we've been keeping ourselves busy watching Yo Gabba Gabba!, and laughing as Casey plays his Star Wars Game. That was supposed to be the video...but alas...it wasn't cooperating. Happy Easter EVERYONE!!!

Wacky Stuff!

2010-03-21T21:10:00.000-07:00

If these pictures look scattered, it's because that's how life has been in our household this past week! Not only did mom and dad have a very busy week at work, but lots of fun stuff has been happening this week. This week was "Wacky Week" at Casey's school, to celebrate the letter W. So, wacky hair day was the same day the Leprechans tricked us yet again! We even set up a trap using butterscotch (like gold) and silly putty, but they still messed up our toys, and turned the toilet water green. At least they left Lucky Charms.

On the weekend, it was our turn to be wacky. We basically transformed Aubrey's room in one day. On Friday night she went to sleep in the crib that she has shared with her older brother, next to the dresser that I changed both of their sweet tiny diapers on for many months. On Saturday by naptime she was in a big-girl bed, with all her new (but gently used) toychest, dresser, shelving and more! She was so excited about her new room, and had no problem going right to sleep, since she can fit many more books and stuffed animals into this bigger bed.

Meanwhile, Casey is still enjoying his bunk beds in his "Star Wars Room" and sleeps like a rock...even while he has a fever...just like he does now. But that isn't wacky at all...that's just life in our home!

As Promised

2010-03-04T23:15:00.000-08:00

Sooo, when I posted that I would do the next post soon about our lovely daughter Aubrey...soon meant "next month". And, most of the more adorable pictures were taken with another camera, so this should probably be post 1 of at least 2.

Aubrey is amazing, and energetic in every sense of the word. She loves her baby dolls and her puppy with all her heart, yet can put her entire heart and soul into telling us what she wants, even if it's in the form of screaming and throwing herself on the floor.

Aubrey is a 2.5 year old with the mind of a teenager at times. She constantly tells us to be quiet, because her babies are sleeping, and gets very upset because she can't put on make-up with mommy. She wants to do everything her big brother does, and has even joined the Star Wars fan club along with her brother. A few days ago we found all of Casey's Star Wars figures tucked into her (my old) red purse! And she has recently started using the word, "Awesome"..in the correct context of course!

But, she is still our baby, and if she's not acting like Hannah Montana, she wants to be our very little girl..with her thumb in her mouth, blankets in hand, and being carried from one place to another. Her tight ringlet curls and sweet facial expressions win us over most of the time, and the fact that she will still cuddle up to us like a newborn doesn't hurt either!

Aubrey Rose is an amazing little sister and second child. She makes all of us laugh, and shows her amazing spirit on an hourly basis. If you need to get ahold of her she can be found in her brother's room, playing with his stuff while wearing her red-glitter shoes and Elmo underpants. This is only after she's gone an raided my make-up and shoes in our room, and jumped on our mini-trampoline while wearing dress-up high heels. :)

Coming Soon...

2010-02-25T23:35:00.000-08:00

All About Aubrey!!!!

With a brother like Casey, I have to make sure she doesn't get lost in all the hub-ub. Soon I will post pics of the cutest little pixie princess in the world. She is a potty-trained, baby-loving, make-up stealing, sassy-talking DIVA. And her curly hair just makes it more adorable.

Truly, Aubrey has often been the second thought when her big brother is in serious condition. And it has always broken our hearts to give her less than our full attention. There is something very heartbreaking about having your tiny little babe come to the hospital to see her family.

But enough with the pity party!!! Aubrey is an amazing, spirited and bright little gal that brings joy to our lives on an hourly basis. Her desire to be much older than she is makes itself present in everything she does.

And as the saying goes, "There was a little girl, who had a little curl, right in the middle of her forehead."...is just the beginning!!!!

CHD Awareness Week

2010-02-06T22:51:00.001-08:00

Our sweet angel without any scars...

Be Warned...if you haven't seen these pictures, they are not for the weak-hearted..because they show what "weak-hearted" children have to go through! February 7th marks the beginning of Congenital Heart Defect Awareness Week, where we celebrate the hard earned lives of these little heart warriors, and educate others on just how prevalent heart defects are in the US. Nearly 1 of every 100 children are born with a heart defect. Our kiddos require major surgeries, numerous hospitalizations, round-the-clock care, and much more. Casey is just one of many. Some have had easier journeys than he has, and others have been much less fortunate.

We were "lucky" to find out that Casey would be born with Tricuspid Atresia when I was around 20 weeks pregnant. The pictures that follow are a small visual diary of what he and so many others have accomplished in their short lives.

So, in our family, Valentine's Day is celebrated in a very different way. It is truly a family holiday, where we try to bring joy to our children, and take them on a family date! We also honor the wonderful doctors/nurses/hospitals, etc, that work so hard to provide the best possible life for heart children everywhere. Happy Hearts Day!!

Casey at 11 days old, after his BT Shunt Procedure

Casey at 21 days old, after the second surgery to band the shunt. At this time his chest is left open due to swelling and covered. We can literally see our baby's heart beating in his chest.

Casey makes it home in time to celebrate his first Valentine's Day

April...put in an ambulance by our home nurse. This is after the heart cath that created a blood clot in his leg that turned it black, and almost had to be amputated. We are waiting for him to recover so he can have his 3rd surgery.

3 months, and his 3rd surgery under his belt...the Glenn.

Just turned one, and celebrating his 2nd Valentine's Day

Numerous illnesses, emergencies, and "normal life" later, he has his 4th heart surgery, the Fontan. This makes 4 open-heart surgeries before his 4th birthday.

BUT......

It's a success, and he recovers in record time! In on December 2nd, out on December 21st.

He is not cured, never will be. But he is finally old enough, big enough, and strong enough to be our little man that usually gets to spend his days as a normal 5 year old.

Heart Hugs to ALL!!!!

Rain, Rain Go Away

2010-01-24T21:45:00.000-08:00

I don't really mean that! I know we need it, and since we've had so much of it lately, I will be that person who washes down their driveway this summer. BUT, it's not easy staying inside for almost a week straight, with a semi-sick kid who probably shouldn't be around others.
So...what do we do to pass the time????

A little kid Yoga!!!

A little breakdancing!

And lots of snuggling!!!

The good news is that Casey hasn't had a fever for over a week, and has no symptoms whatsoever from his RSV. So, thankfully it looks like he escaped the major symptoms and complications that can go along with it. Let's hope his lungs stay as dry as Aubrey, since she is successfully an underwear gal!!!

The Good, The Bad, and The Ugly!

2010-01-19T23:04:00.000-08:00

Yep, we've had all three around here in the past few days...

1. The Good: I had a great (but tiring) time in San Francisco overnight this weekend. My sister and I drove down to help my cousin bake for her booth at the Fancy Foods Trade Show in SF. She has a great, new cookie company called Cookie Zen (see link on the right). Her cookies are great, natural, and yummy! And it was so great to see her.

More good; While I was away, for some reason Mike decided to put Aubrey in underwear. And he was completely successful! He is a rock star, and we are very, very close to having no more diapers in the Dyke Household. Aubrey has been doing really well, and is very proud of herself. Mike even got Casey to "help" by checking on her, encouraging her, etc. Hip, Hip, Hooray!

2. The Bad: Casey got sick right after his birthday, and has spent most of his time as a five-year old, sick. He has been a real trooper, taking his nebulizer treatments without fail, and coughing into his arm like a good boy. However, he misses school, and playing outside, and with friends.

3. The Ugly: I took Casey to the pediatrician on Friday because he was having such a hard time breathing all of a sudden, and coughed so bad he threw up. The course of treatment they gave him really helped this weekend, and he hasn't had a fever in two days. But....today the lab results came back and he tested positive for RSV!!! BOOOOOO. Not only can this virus that it basically your "typical" cold in "typical" people cause immediate symptoms, but it can often turn into pneumonia even after they show signs of improvement. So....he's home again this week...getting bored and sad. Hopefully his fever will NOT come back, and the coughing he still has will get all that funk out of his lungs!!

Casey is FIVE!!

2010-01-13T20:54:00.000-08:00

It is hard to believe that five years have passed since our teeny tiny blue baby came into this world. We are thankful for every minute! In fact, the reason I have a minute or two to update the blog is because I was home from work with him today as he has his first fever of 2010. So he won't be getting his second H1N1 booster tomorrow. Hopefully it will pass quickly, as he is already bummed he can't play with ALL his new toys!

Nothing says Happy Birthday like, "Ice cream and cake do the ice cream and cake!"

When the weather keeps you inside for too long, kids learn to play teeter-totter with each other..

Star Wars, Soldiers and Transformers, oh my!

Moose tuckered out from partying

The birthday gift that thankfully wasn't. Our cat Simon decided to catch a present for Casey. Luckily we saw him bring it to the lawn, and intervened. Seriously?? How does any animal catch a humming bird? After the shock wore off little birdy flew away.

Christmas, Canines, and Cardiology

2009-12-30T19:26:00.000-08:00

Happy New Year! I can see from all posts on blogs and facebook that everyone has had great times, and great pictures to show for it. We too had a wonderful time, and the days continue as we celebrated our anniversary, got a puppy, and had a great cardiology appointment. Here's to a great new year for EVERYONE!!

Christmas Eve-afternoon. Celebrating with our neighbors!

Christmas Eve Dinner, flown in from Happy Joe's Pizza in Davenport Iowa. A childhood favorite

Getting ready to sprinkle reindeer food on the lawn

A crazy Christmas Photo

Christmas Day...someone is ready to cook!

And play with a new racetrack!

It may not look like it, but she loved her Princess Scooter and Tinkerbell stuff!

And yet another noisemaker!

December 28th, our 7th Wedding Anniversary. Celebrated by a trip to the snow with the kids...

And to keep things fresh and exciting....a spur-of-the-moment puppy!!!

Moose getting acquainted with his big brother Koa

Casey and mom at the cardiologist's office. Dr. Parrish said everything is looking great. No need to come back for 6 months unless any issues arise!

Casey calmly, sweetly and wonderfully still during an echo. The behaved he's ever been for this procedure :) This was the very same room I sat in over 5 years ago when pregnant while the cardiologist was diagnosing him in-utero. AND NOW HE WILL BE 5 YEARS OLD in 4 DAYS!!!

Family Photos

2009-12-20T23:30:00.001-08:00

I promise to post on specific events and happenings soon. But Mike finally made the leap and purchased a super duper major fancy, big camera, so pictures taken on that camera need to stay on there for a bit before I learn how to upload them. In the meantime, here are some pics from our "photo shoot" a few weeks ago. I love how cute my kiddos are!!!

Winter Wonderland

2009-12-14T20:39:00.000-08:00

We have had lots of things going on around here, all good, but very busy! A few holiday parties, lots of decorating, and just the teeniest bit of snow that came with record breaking temps here in Roseville. Here are a few pictures of the happenings.
Next up, more holiday parties for the kids and grown-ups, graham-cracker houses and holiday potluck with my students, a little more shopping, and finally...two weeks off for Winter Break!

If you look really closely, there is a lily bloom AND snow!

It's not much snow, but it was cold!

Someone who grew up in the Midwest and hasn't had snow in her hometown since 2002 got a little excited, woke up many times during the night, and finally saw snow at 4:30am when this picture was taken.

Hearts of Hope Holiday Party...crafts with the Girl Scouts

Aubrey-mommy

Back to work

Partied out

New night, new party. An outside viewing of Polar Express at a neighbor's house!

FONTANniversary!

2009-12-02T20:47:00.001-08:00

Yes, I stole that term from another Tricuspid Atresia patient, but it is so appropriate! One year ago today my son had his chest cut open for the fourth time in less than four years. He sailed through his Fontan procedure, spent 3 weeks in the hospital, and was discharged a few days before CHRISTMAS!

As of today, he has not been re-admitted to the hospital for any reason, and has spent the last year using all the energy and spirit he has gained. His vitals have remained stable and his oxygen saturations have as well. Although we have no idea what the future will hold in regards to his health, we hope it will be a long time before he will need major interventions.

So how did this miracle man spend his Fontanniversary? Well at the pediatrician's of course!! If it's not one thing, it's another. This time another was a teeny tiny mouth wound that turned into an infection within 24 hours and made his lips swell to gigantic proportions. Thankfully it doesn't seem to be hurting him, and he will now be on antibiotics for 10 days.

Small potatoes to what we were dealing with a year ago!

My Thankful List

2009-11-24T22:57:00.000-08:00

Lots of my friends have posted often (sometimes daily) on things they are thankful for. I didn't live up to that task, but for the past few days I have been compiling this list. Which is why it is in no particular order...truly.

I have probably missed a few things that will make me feel bad later on, but this is what has been in my brain over the last few days.

My husband

My children

My family

My hubby's family

My extended family

My friends; old, new, and reunited!!!

My son's amazing heart and bravery

His entire cardiology team, past and present...and future!

My blog and it's readers

Facebook (I NEVER thought I'd say that!)

Our home

My job, I love what I do, and the time off with my kids

My husband's job

TiVo

Ann Taylor Loft

The internet (see, I told you this was in random order)

Sanitizing Wipes and Anti-bacterial hand gel

Lysol

Pedicures

Cheese....of any type, flavor, texture...etc.

That my dad cooks great Italian food

My neurosurgery team

Wine

That my children let me watch them sleep

My heart support group; Hearts of Hope and the wonderful people in it

Veterans, including my grandfathers, uncle, dad, and more

Bottled water

My laptop (now you have to believe this is in random order!)

Music; particularly-Van Morrison, Jack Johnson, James Taylor, John Mayer, Black-Eyed Peas, most 80's, and anything that makes my family sing!

Good food. At good restaurants or when my husband cooks.

That my best friends and I can act like we are still 12 years old.

The USA

My hairdresser, flat iron, blow dryer, etc.

Decorating for any holiday

Netflix

Bendaroos (if you don't know what they are, get them for your kids!)

Our bedroom

My dog Koa, our firstborn

Every heart child in the world

Jimboy's Tacos
Diet Coke
Coffee and Drive-Thru Coffee Houses
Antibiotics and all Western Medicine
Our new Drive-Thru Pharmacy!
My kids' giggles
Digital Cameras
Love
Hope
Faith

I have so much to be thankful for, including my followers who are reading this! Have a wonderful Thanksgiving!

It Continues...

2009-11-18T22:15:00.000-08:00

My happy, sad, happy, sad days continues.

1. Sad; The rescue team finally found my nephew's body...not far from his fishing boat, once they released some water. A very sad outcome for a very young man. At this point the family is waiting for details on cause of death. My immediate family is okay, but Mike is sad that his brother lost his son....something that hits a little close to home.

2. Happy; Although we are dealing with sad news right now, we are in a much better place this November than last. A year ago I was still recovering from brain surgery, and cautiously awaiting Casey's 4th heart surgery.

3. Sad; My kids are sick, at the busiest work-week of my school year. Mike has been home with them all week, and will have to keep Aubrey home with him again tomorrow. They both went to the doctor today and thankfully tested negative for flu, but she has been running a fever since Sunday! Poor sick babies...poor Mr. Mom!!!

4. Happy; If I can make it to Friday....I will have 9 entire days off of work, to spend with family and friends. I am excited to be with my kids, excited to hang out with my family, and excited to see friends who will be in town.

5. HAPPY!!!!! I got an email from a support organization, Saving Little Hearts. Each year they put out a calendar showcasing heart kids. I submitted his photo and they accepted his!!! Along with 600 other entries, which means his picture is teeny tiny...but it's there!!!! The month of March in 2010 MUST be lucky if his face is published! Check it out at http://www.savinglittlehearts.com

Thankfully, more happy than sad!!!

Tidbits

2009-11-11T21:10:00.000-08:00

Lots of things going through my head today..in this order, then it switches order

1. Thank you to all the veterans of our great country...and those still fighting right now. I am especially proud of my great grandfathers, grandfathers, father, uncle, aunt,...and so many more!

2. Casey got his H1N1 vaccine today! Thanks to an AMAZING doctor, Teimor Nasirov. He is a pediatric heart surgeon at Sutter Memorial, and really likes our support group Hearts of Hope. When he heard about the trouble some of us are having getting our heart kids vaccinated, he took action. Today Casey got his...right along with his heartfriend Drew! They went in to together, and neither one of them cried at all. Power in numbers!!!

3. Bad News; Before we left for the appointment, we found out that my nephew...Mike's oldest brother's son is missing. Darryl L. Dyke Jr. was at a campsite near Yreka, CA with his dog, canoe, etc., but hasn't been heard from since October 28th. They found his canoe in the water, and his dog...alone. It has now turned into a search and rescue effort...and the signs of finding him alive are not good.

Happy. Sad. Happy. Sad. More details as I get them...

2009-11-01T18:31:00.000-08:00

If you think these pictures are in a crazy order...then you know what our weekend was like!! I know you'd rather see pictures than read text, so I got them up in no particular order. Friday Casey had his Halloween Bash that included a parade with his preschool class. Saturday the kids carved pumpkins with dad while I picked up the house to prepare for our Pre Trick or Treat Party. Many of the neighborhood kiddos came over so we could spend time playing and admiring costumes before we scattered to go trick-or-treating. Grandma and Grandpa spent the night and helped hand out candy, and had cuddle time with tired kiddos at the end of the night. Sunday they woke up bright and early and Aubrey and I headed to Disney Princesses on Ice, thanks to some wonderful friends. Casey and dad worked on organizing the garage.

After all that, I thought I earned a little "adult time", so I went and got a pedicure. Now Halloween is mostly put away and Thanksgiving is up! Tomorrow starts a VERY busy few weeks at school so enjoy these pictures...it might be awhile before I can post more! Hope everyone had a safe and Happy Halloween!

Halloween for Hearts of Hope

2009-10-25T20:35:00.000-07:00

It seems like we've been celebrating Halloween for the past two weeks! But today was an extra special celebration for Hearts of Hope. The families in our support group were invited to dress up and have fun together at the zoo. The day could not have been more beautiful, and it was so fun to see all the little heart kiddos being normal and having fun! We even had a pediatric heart surgeon join us with his little girl.

Casey wasn't into wearing his Spiderman costume today, but Aubrey loved her Fairy Witch costume I bought yesterday at 60% off, so she didn't ruin the real costume for the real Halloween!

Drew and Casey...heart buddies for life!

Yummmy

The monkeys were a hit today!!!

Heart friends assisted by Superwoman

Fearless Fairy

Eight Beautiful Children.....that have had a combined 24 OPEN HEART SURGERIES!!! It doesn't matter what they are dressed as for Halloween, they are all Superhero's in our eyes!!

FUN, FUN, FUN Weekend!!

2009-10-18T20:14:00.001-07:00

A weekend filled with fun, despite a small fever on Saturday from Aubrey, probably due to her flu shot. Casey and I headed to Pleasanton on Saturday for a friend's daughter's birthday. It was also a pre-Halloween party. Such a great time to see my friends from the credential program and their families. Casey and I even agreed on the music for the car ride.

Playing Pass the Pumpkin at the party.

Mini-Bounci House Fun

What a cute group!!

Today two of my bestest friends (sisters) and our hubbies and kids hit a very small, very local pumpkin farm. Since Mike and Casey will be going to Bishops on Wednesday, and I am going with 100 of my kindergarten friends on Friday, we decided to try a new place. It had NO crowds, but still the fun stuff. AND, Casey and Aubrey both had their first pony ride!!

Forget "two peas in a pod", we're "three pals in a patch"!

Aubrey was totally happy with the tiniest of pumpkins :)

And then there's Casey....

Why does Aubrey look like she is going to cause big trouble on the hayride???

Csaey LOVED riding the horse!

Casey and Rylan claiming victory

A little snack break. Nothin' says tailgating like juice boxes and yogurt covered raisins!

Aubrey and Bailey's turn. Aubrey said she was done after about one minute.

On to face-painting

And finally...LUNCH! We found a great pizza place and the kids enjoyed "playing" video games, while the gals chatted, and the men watched football!

Weekend Getaway!!!

2009-10-11T20:56:00.000-07:00

This weekend we had a chance to getaway for a mini-adventure. We went to David Wally's Hot Springs Resort in Genoa, NV. It is a beautiful place that has been here for hundreds of years, right next to the very first settlement in the state of Nevada. The natural hot springs are so cool(and hot), and so is all the wildlife around us. We went over the hill into Tahoe to have dinner with friends on Saturday, and then explored the other side today, in Carson City

David Wally's has a playground on site!!! Thank goodness!

Looking at all the fish. SOOOO many fish

Someone's excited that the slide is "pink"

Someone (me) is excited to see beautiful fall color

Snow in the distance, but we are wearing shorts!

What happens in Carson City...stays in Carson City. Just kidding! The kids had a blast at the Nevada Children's Museum!

Except that this wasn't Aubrey's favorite part!!

I have titled this picture after the John Cougar Mellancamp song...

Ain't That America!!!!

Seriously????The baby and mama deer, the white house with the flag, how perfect! And of course the 4x4 in the driveway was American made!

This photo was taken from our car!! The deer in Genoa hang out in everyone's yards. And basically walk down the roads. Ironically, this house is less than a block away from the oldest bar in Nevada. Those deer are smarties......

One Day, Two Parties

2009-10-04T21:33:00.000-07:00

On Saturday we had two parties, both near our home, but for very different reasons.

In the afternoon Casey and I headed out to meet a new friend, Aviana Hodder. Aviana is a little girl who was in a horrible accident over the summer. Crossing the street holding her grandfather's hand...and hit by a car. She had severe, life-threatening brain injuries that required 6 surgeries. She turned 3 in the hospital, and is finally HOME!!! She has a LONG road ahead of her to be able to walk, talk, eat, etc., but Saturday was about celebrating her survival and welcoming her home.

I met Avi's mom through her blog, after hearing about her story from a friend we have in common. We bonded because we have other things in common; Aviana was at UC Davis being tended to by the same nurses and doctors that take care of Casey. And, since my brain surgery Aviana and I share the same neurosurgery team!

It was an honor to meet her and her family, especially because they live a few blocks away! Check out her amazing story right HERE

In the evening we celebrated a friend's 30th birthday. Great fun!!!

Anniversary

2009-09-27T21:01:00.000-07:00

Sunday was my anniversary.

The anniversary of my divorce.

The divorce between me and my brain tumor Giggly.

Ha! I bet I had a few of you really confused for about 2.5 seconds!

Below are pictures from exactly one year ago. I am so glad that my divorce is most likely final, and it was such a clean break. The relationship was never emotional and full of love. In fact, it was usually a headache just to deal with.

Giggly was never truly there for me, did not support me, and caused problems that could have ended my life. I am happy to be free from it, and even got titanium and platinum bling in my brain in exchange.

However, I wish I wasn't the one who continues to pay the alimony...to UC Davis, my hairdresser, and to all the friends and family that listen to my blame anything I forget on Giggly.

Now I'm feeling giggly!!! :)

Me right after surgery! I told Mike to take all the pictures

The day after...a visit from Kate and Brian.

Don't faint! It looks pretty good for less than 48 hours post surgery!

See, I even took pictures of myself. I was still on some heavy pain meds at the time!

3 days later. Life is good!

Since I'm good and healed, keep an eye out for my new little friend Aviana. After a horrific car accident, while this little gal was walking with Grandparents, she spent months at the same hospital I did. Same neurosurgery team, same nurses that Casey had, etc., etc. But Aviana's brain and body have a long recovery. I will post a pic of my new friend and our head scars soon!!

What a Week!

2009-09-19T21:53:00.001-07:00

Can you tell that we have been VERY busy this week?? The first few pictures from Casey's first day of preschool are actually last week, but he is just as excited this week. His new teacher is amazing and he has already brought home so many projects!

There was one or two days last week where it wasn't in the 90's and we had fun with our neighbors making smores in their fire pit. As you can see, Aubrey was more interested in cuddling with Jackson!

Then of course...the main event....Casey's HEARTWALK!!!!! He raised so much money last year that when we picked up the fundraising materials for this year his name was printed on the envelopes! And once again, this year his friends, family and supporters have done it again! He is at an age where he really understands why he is doing it, and was so excited that he was going to see his heart friend Drew (above picture). Although you can't tell from the pictures, Aubrey had a great time too. AND...thanks to Casey's successful Fontan, he walked the whole time, or ran!

If that wasn't enough fun for one day, we then headed to the other end of the park for a BBQ put on by Casey's heart team from the hospital. We came, played, ate, and THEN...one more event.!

Brooke's birthday party!! We missed the first part due to the walk, but met up at Build-A-Bear where they each got to pick, make, stuff, and dress their own animal. So much fun and so glad we could get there!

Faith Restored

2009-09-10T21:40:00.001-07:00

I just ended a VERY long day. Mike is out of town, and although mothers "do it alone" all the time, it still seems very difficult to me to get two kids ready, fed, medicated, and out the door in time to get me to work by 8am or so. Then today, I only got to bring them home for an hour before we all headed back to school so I could attend the PTC meeting (as a teacher, not a parent).
So, we get home at 8:15pm, and I rush to get them medicated, changed, brushed, and into bed. I take out the garbage, feed the dog, and finally make dinner for myself as I sit down to look through 3-days of mail and check the blogs I follow.

AND THEN I SEE IT....this post.... the one that tels me the wonderful, talented, courageous, family man PAUL CARDALL has received a NEW HEART!!!! A grown (but youngish) man with Casey's defect (Tricuspid Atresia) who has been on the transplant list for over a year is finally getting what he so deserves! The heartblog community is rejoicing!!!!!

It was just a week or two ago that I felt sick to my stomach, worried about how I would react if he never got his heart. He has been in the hospital waiting, due to the fact his condition was worsening...my mind was so upset for him, and his family...but also for Casey and our family. How would I keep faith if Paul didn't get his heart? How would I believe in a long and successful future for Casey if Paul didn't get his?

NOW I DON'T HAVE TO WONDER!!!! THANK YOU PAUL CARDALL for being so transparent in your journey, and so inspiring!!! Good luck in your recovery.
Please stop by his blog and get to know this amazing man!

Happy Birthday Mike/Daddy!!!

2009-09-07T22:35:00.000-07:00

Here's what the pictures are...

Simon bringing his own gift for Dad, but then choosing to eat it himself.
Mike watching his gift. I had some of his old high-school football tapes transferred to CD's. This was his stance for at least two hours! And when his brother joined us...more of the same!
Aubrey enjoying daddy's ice cream cake
Mike and I getting ready to go out!
The boys...it's been a long time!

We had a great 3-day weekend hanging out around the house and celebrating Mike's birthday which puts him in his "late-ish" thirties!! My sister watched the kids on Saturday while we went out with some long-lost friends, and we spent his birthday being lazy...got big sandwiches and went to the park...picked up stuff for dinner...and enjoyed the beautiful weather while eating a great dinner! What a way to end the summer!!!

Summer Wrap Up

2009-08-30T18:11:00.000-07:00

As I finished my first week back at work, starting a new school year, I think that summer is officially over! We had the best, busiest, and fun summer yet. Here are some random pictures of other fun things we did...

Cool car with our cool friends at the zoo.

Petting and feeding animals at the State Fair

Rides, rides, rides!

Casey, dad, and Grandpa at the Indy Races

They got to meet the Azul drive Mario Morales

Slightly less scared of water this summer, but we will definitely be looking into year-long lessons!

Other events, happenings, and cuteness...

Visited the Jelly Belly factory with the Kent kids
Played with kids of my co-workers
Went to Funderland with Hearts of Hope....amazing event.
Transitioned Casey from naps everyday to "quiet time"
Casey started to ride a bike (with training wheels)
Aubrey started to climb on everything, everywhere
Aubrey is obsessed with putting lotion on, all the time
Both kids LOVED going to the local golf course for family nights to play on the putting green and bounce house
Casey learned how to use my laptop to play games on pbskids.org
Aubrey's crib got converted into a toddler bed this weekend..next up...potty training!

And up next;

My dad continues to recover from his thyroidectomy this past week
Mike's birthday is next weekend!!!

Cape Cod-Take 3

2009-08-16T00:06:00.000-07:00

Here are the last pics I will post of our trip. There is too much ro share! I start back at work this week, and the kids start back at daycare so the posts will be fewer and farther between. But as you can see, we ended a great summer with a great vacation!!!

The water baby.....
How "touristy" of us!

Hydrangeas everywhere in every color!!

Exploring

Sooooo not the "suburbs"!!

Eating the yummy catch that Mike and Tim caught

Who cares what state we're in, this is just cute!!!

At Plymouth Rock, which is below the guard rails

Best Potato Chips in the country!!!

Okay, I got slightly obsessed with the flora...

After the catch, before the feast

Cape Cod Life...they have the funniest signs!!

Don't let their faces fool you, they loved riding in Uncle Tim's Boat!

Our home away from home!!!

Cape Cod

2009-08-09T15:06:00.000-07:00

Yay for our first plane ride!!! They both did great!!!

One of many treats I packed

The standard pose

No red eyes" for the kids...just us!

Whale-watching on the Dolphin Fleet in Provincetown

One of the many we saw

Having fun at the Zooquarium in Yarmouth

Tasting the best chowder in MA at Captain Parkers, along with scallops, shrimp, oysters and fish&chips..YUM

Since lots of you checked the last post, but didn't take a guess as to where we were, you must've known we were visiting Mike's brother and his family. They have a beautiful home on "The Cape" and we had a great time experiencing so many things! Mike had business in Boston for the first three days so we waited to do the big stuff until he was able to join us. There was so much to do and see, this is only the second round of pictures to post..

We're Back!!!!

2009-08-06T22:02:00.000-07:00

But can you guess where we were????? Most of you that read this blog (to my knowledge), know where we have been for the last 12 days. But, I challenge the unknown readers to guess...leave a comment!

These are only a few of the 800 pictures that we took. More later...

Casey Hits UTube

2009-07-31T18:56:00.000-07:00

Barely, but it was still a surprise to see him in Paul Cardall's video, since I forgot I sent him the pictures a few months back. To see Paul's moving video, click here. Paul Cardall is one of the adult blogs I follow, not only because he has the same defect as Casey, but because he is an amazing and inspiring person. Not to mention VERY talented. He is a musician, and has released more than one CD.

As an adult with a CHD, who has been on the transplant list for almost a year, I admire how he still cares about so many others with CHD's, especially children! He has such a passion for spreading awareness, and his talent and dedication help to make all CHD children/adult's voices strong!!

Giggly Remains GONE!!!

2009-07-23T17:53:00.000-07:00

For those of you who haven't followed this blog since this past September, you might need me to introduce you to Giggly. Giggly is the nickname for an abnormality that was found in my brain during a rountine MRI last summer. Giggly was suspicious of being a glioma, which could have been cancer or some other tumor.

Last September, Giggly came out via Dr. Boggan in a right-temporal craniotomy. I was not super excited to have brain surgery, but Casey had already been through so much that I knew if my little guy could handle all that, then surely I could do this.

Today I had another follow-up MRI and appointment with my neursurgeon. My scans looks so good, clean and boring that I don' t have to go back for AN ENTIRE YEAR!!!!! Yahoo!

Take that Giggly!!!!

Fun in the Sun

2009-07-17T22:04:00.001-07:00

Here's some pics of swimming lessons and more!

Guess who's excited to get started, but scared to put his face in???

Maybe he likes it because there is always a girl he can hang on to!

I'm not sure what skill they are practicing right now because.....

I'm in the water with the fearless one at the same time!

Even bathing suits are too big for this girl!

Playtime in the shallow end

A progress report and lollipops for the "Duck"

Other summertime ways to pass the time...taking pictures of all the dragonflies in our yard. But it was over 100 degrees so this was taken through our window.

And of course, it wouldn't be summer in Northern Cal without fires. This smoke is from a fire about 30 minutes away. On a clear day you can see the Sierra Nevadas (nope, it's not just a beer!). If you look at the hill right above the fence line, you can see the left part is black. That's from the fire that attacked our neighborhood on July 5th. Darn kids and their fireworks...and empty lots due to the recession!!

The 4th...and before!

2009-07-07T07:30:00.000-07:00

We had a very busy week, which wound down with a great party on the 4th with our neighbors and their pool! Here are a few of last weeks events....

Casey had his first cardio check-up in three months. He did amazing, especially during his EKG. For the first time ever he didn't cry, and actually took off all the stickies himself afterwards! He usually makes us keep them on during baths, etc. until they fall off on their own. His oxygen saturations were 93%. Seriously!!!! And I don't want to jinx anything, but if all goes well we don't need to go back for six months. We have never been allowed to try to go that long between appointments!

Getting ready to go to swimming lessons, with rain boots on Aubrey's feet because that's what she put on by herself. Doesn't everybody wear rain boots in summer???

To the Zoo! Our zoo is pretty small, but it's perfect because you can get through it in two hours or less! Here is Aubrey enjoying time with her friend...the daughter of my good friend!

She actually took her thumb out of her mouth for most of the visit...

The 4th down the street. Great fun!

At least someone in this family is willing to wear a bikini!

Having fun watching fireworks...even if she doesn't show it in the photo.

Casey really enjoyed the sparklers

Getting ready to go home while cuddling with Aunt Cara!

My Best Friend's Wedding

2009-06-30T21:41:00.000-07:00

I know, I know...that heading is a movie title. But, it was real life to me this weekend! One of my best friends, Kate got MARRIED this weekend. Yes it was sunny, yes it was HOT, but it was SO MUCH FUN! Kate and I can have been friends for over 20 years, and I couldn't be happier for her and her hubby. Here are some pics of the wedding, courtesy of MY hubby, since I was lucky enough to be a bridesmaid... Kate's sister and I (my other best friend) at the rehearsal

Look at all those bridesmaids...Kate's a popular gal!

The big day, she looks amazing!

The bride's niece and I...isn't she cute!

On our way back into town with the happy couple.

Of course, there was time to be silly!!!

Media Blitz; Experience #4

2009-06-24T16:21:00.001-07:00

I think that's what number we are on...I've lost track! ANYWAY, this experience happened a few months back, but we finally received the finished product in the mail last week. Casey appears in the Summer edition of UC Davis Medicine magazine! You can read the article where I discuss certain aspects of life in the PICU by clicking right here. If you have time, read some of the other articles. The entire summer edition highlights the CHILDREN'S hospital. Too bad they only sent us ten copies for ourselves!

Due to the newest media experience, Casey now recognizes the logo for the hospital, and when he shows people his picture in the magazine he says, "That says UC Davis. That's the hospital I lived in." How amazingly cute/sad is that??? He also has made the life-altering decision about a career choice. He has stated, "I don't want to be a grown-up, I want to be a doctor INSEAD." I didn't bother to tell him that a BA and PHD in "grown-up" is much less expensive and time-consuming than a doctor's.

In other news...summer has started out great! We are having fun using our new backyard furniture, catching lots of different bugs, having playdates, and visiting parks.

However, Aubrey seems to have changed the very day since we threw her a party for being two!!! She is an amazing little girl, who makes my heart melt every day. She also does a great job of making sure she is not overshadowed by her medical marvel of a brother. But wow, she is sure testing us!

Yesterday I had to carry her out of the library screaming, kicking and hitting. Why?? Because you can't take the play shopping carts they provide home with you after you check out books. Then today, while the kids were playing outside RIGHT IN FRONT OF ME, she bites her big brother...through his shirt on his back, and leaves BIG marks...that are still there. Yikes, I've never had a biter before...advice please!!!!

Happy Birthday Aubrey!!!

2009-06-16T22:46:00.000-07:00

Today is the official birthday of our little Diva! Two years ago my water broke on Father's Day at Safeway! Aubrey entered the world VERY quickly after that without time for my beloved epidural, and with barely enough time for me to get both legs onto the bed at the hospital! She has continued to keep us on our toes, and recently has transformed from my baby girl, to a little girl. She walks, talks, and acts like she is large and in charge. But she is still our little sweetheart who finds time to hug, kiss, and cuddle family, friends, pets and dollies.

Happy Birthday Aubrey! We can't wait to see what the next year brings!

Don't Leave Us!

2009-06-13T00:29:00.000-07:00

Sorry for the delay in posts, but the last two weeks of work and home life have been very, very busy. Remind me next year to NOT plan my daughter's birthday party for the day after school gets out!
Yesterday I ended an amazing year with my class. I have been teaching for almost a decade, and every year, I get warm fuzzies, but rarely cry. This year was different...not only did I have an amazing group of kids, but I think what made me more emotional was realizing that I was only with them for 20 school days before I had brain surgery...then moving on to Casey's 4th open heart surgery...only to return to the classroom in January. Where I have been loving it ever since. To think that 8 months ago I didn't even know if I was going to live...let alone return to my job, and still be able to do it! Life is good.
Because of the hurdles my family has been able to manage this school year, I am also emotional for the kiddos in my class that have also overcome major obstacles. My sweet student who came into my class in August with Leukemia is officially in REMISSION!!!!! My sweet, energetic foster boy who only joined us 2 months ago, after being removed at least 7 times from different living situations made me smile every day, and pray that I will see him next year when he's in first grade. And...to top it off...for the first time in my 6 years in kindergarten, one of my sweet, smart, and caring students was crying at the end of the day because he was so sad I wouldn't be his teacher anymore!! Needless to say, his mom cried...I cried...he continued to cry...thank goodess I wore waterproof mascara on purpose that day!
And, just to end the post on a silly note...in my nine years of teaching, today is the first, "Last Day of Work" that I had to use my windshield wipers due to rain!!!! Something us Californians rarely see!
Tomorow someone is having a 2nd birthday party...and her grandma is turning 70. Lots of pictures to come!

We are Grate(ful)

2009-05-29T23:51:00.000-07:00

It is very late on a Friday night. We recently got home from our first family minor league baseball game, where we spent time eating, and cheering. Although it was exhausting with two little ones, and chili-cheese fries, we had a great time. My goal was to post pictures of our great time.

However, when I got the kids to bed, and settled in with my laptop, ready to watch the last of Jay Leno show, I am reminded of how lucky we are right now in our lives. I was devastated to read about the following heart families;

1. Faith at http://www.faithduarte.blogspot.com/ This amazing little girl has been through more than I can imagine, and has a family that willingly adopted and accepted her despite her medical needs. Although the last time she entered the hospital it was for a heart surgery, her complications from other issues are so severe, that it looks like they have finally reached a point where they can do nothing more for her. Not only is the the most heartbreaking thing I can imagine, but this little girl is also breaking the hearts of the doctors, surgeons, and nurses that have kept my son alive for the past 4.5 years. The Duarte Family is amazing and inspirational.

2. Moriah at http://www.momentswithmoriah.blogspot.com/ A young family that started out in high school. They got married and moved across the country, only to move back once they knew they were pregnant, and had a heart child. Moriah has spent the last SEVEN MONTHS in the hospital at Stanford, yet her family remains in tact, optimistic, and functional

3. Little Lucas at http://www.rietkerkfamily.blogspot.com Little Lucas lives so close to us, and was born with the same defect as Casey. He is only a few weeks old, but his story resembles Casey's SO VERY CLOSELY that it makes me ache for the family even more. Every incident his mother describes on her blog brings me back to the times when our son was the closest to leaving us. This family has a long road ahead of them, and I can only hope our little spunky boy can provide them with some hope and comfort.
So, as you can see, what started out as a post wanting to show how happy we were to be able to experience certain things as a family, quickly turned into a post that shows that we are so lucky to BE a family...a family of four....a family at home...a family that has a chance to go to a baseball game.

School's Out for Summer!

2009-05-21T21:31:00.000-07:00

At least for Casey, I still have a few weeks to go. Today was Casey's last day of his first year of preschool. Although he only goes two days a week, for two hours each day, it is truly a milestone for him. I remember 3.5 years ago talking with his home healthcare nurse, and ALTA Regional Services about daycare options for children on oxygen. I pictured my boy not being able to go to school because of his condition. Seriously, up until this year, we didn't even know if his immune system due to his heart condition could handle the preschool environment. Not only did he LOVE his first year of school, but he thrived. In fact, this poor guy had to miss 3 entire months due to his surgery, yet didn't blink an eye when he returned. We are so proud of all he has accomplished, in preschool, and in life!!!
Here are a few pictures of his last day...

A picture with proud papa

The teacher in me made sure we took photos, even if I couldn't attend his last day.

The program was held at a local park, and Aubrey wasn't too excited that it wasn't about her!

Playtime after a musical performance. I tried to upload Casey singing his solo, but I sat here for an hour and it didn't take, so I'll have to try later...

WAY TO GO CASEY!!!!!!!

Lots of Stuff

2009-05-19T21:27:00.001-07:00

No pictures, sorry, but we have just been one busy family. Mostly doing different things! This past weekend Aubrey and I had attended a birthday party for a neighbor little gal. After that I drove downtown to spend the night celebrating one of my best buddie upcoming wedding...her bachelorette party. It was lots of fun, and we were treated like royalty due to some great hook-ups. Then, on Sunday I met Mike and the kids at UCDMC to the Children's Miracle Network Reunion. Basically, a little party for kids that have been patients at UCDMC in the past year or so. We didn't stay long because it was VERY HOT, even by Northern California standards!
Back to work, with only 16 school days left! Tonight was our Open House, where my kindergarten class honored the author and illustrator Eric Carle. Our room looked fantastic, and we had a ton of fun. Here's a few interesting facts about the author of The Very Hungry Caterpillar, Brown Bear, and SO MANY MORE!
1. This year is the 40th anniversary of The Very Hungry Caterpillar
2. This year Eric Carle turns 80.
3. The man has a blog!!!!! Check it out at www.ericcarle.blogspot.com!

We're With the Band....

2009-05-10T20:58:00.000-07:00

That's right! My sister is the lead singer in a band named "Busted Flat". Yesterday, they had one of their first public gigs on Second Saturday Artwalk, where midtown blocks off the streets and all the galleries open, have bands, etc. We first celebrated Mother's Day early with a great meal at Chicago Fire Pizza with grandparents, then we all headed to hear Aunt Cara sing. It was great, and the kids had a blast, dancing the night away.

Today was more mellow. We basically hung out together as a family of four. We had a picnic in the park, then took the bike trail along the creek and went searching for pollywogs, minnows, and tadpoles! Happy Mother's Day to all Mom's out there...

Testing out the microphone

All access VIP pass

Never one to pass up and opportunity to be in front of a crowd!

Mother's Day...crazy hair on the slide!

Mother's Day in Mother Nature

Fishin' around for....fishies!

Media Blitz; Experience #3

2009-05-05T22:00:00.000-07:00

If you haven't had a chance to read the post below, this post will only make sense if you do so!

Adding to the story of the Walk-a-Thon (media blitz#2)....A wonderful woman named Leslie from the Children's Miracle Network saw Casey speaking to my school, and asked if we'd be interested in doing more with the Children's Miracle Network. Of course we said yes...how lucky to have a chance to help sick children everywhere!

So, last Wednesday we attended the Children's Miracle Network Sponsor Breakfast. Basically, it was honoring all the major local sponsors like Costco, Wal-Mart, and hundreds of other businesses (including Wild Bill's Tatoo!!!). Not only did I attend with other co-workers as a member of Blue Oaks School, who had a check to present, but they also wanted Casey to come up on stage and share some of his story to inspire further giving.

May in "Miracle Month" for the CMN, where they push all their sponsors to raise money by hosting events, and of course, pushing the purchase of those red and orange balloons everywhere you shop.

It was a long morning for a little boy, but he got up and talked about his "tubes", his surgeries, and even named some of his doctors. And, it was also sweet because some of his nurses and doctors were there to see it! In his off time he was entertained by Wild Bill himself, who has a Tatoopalooza or something like that.

Here are some pics of our morning. Stay tuned for Media Experience #4....

Nurse Celia trying to keep him busy!!!

Proud sissy, although she didn't get it until Casey was on stage!

The UC Davis Aggie Band, one of Casey's favorite things about the morning!

Casey and "Kat", a radio personality and MC of the event.

Our hero...Casey's heart surgeon Dr. Raff (always prepared with stethescope in pocket). Not only is he a doctor, but you can tell he has little boys, because he took Casey off our hands for a minute or two!!

Media Blitz; Experience #2

2009-04-28T19:07:00.000-07:00

So, a few posts back I mentioned that Casey will soon be on a "media blitz". I guess it started back in January when UC Davis Children's Hospital reccommended him to the Children's Miracle Network to pose with the owner of Jimboy's Tacos. That post is in January's archives!

The second experience was a complete surprise to me. My school holds a walk-a-thon each year to raise money in part for the PTC, and part for a charity or non-profit group that they decide. This year they decided to raise funds for the Children's Miracle Network (I had NOTHING to do with that decision).

Anyway, even in this horrible time of recession, when many parents at our school have been laid off, our students raised over $8000 in just a few weeks.

When the walk-a-thon was held, my daycare providor brought my own children to watch her children. My kids stood on the outdoor stage and cheered everybody on as they passed, and blew kisses at mommy walking with her class.

At the end of the event, the entire school gathered by the stage, and my co-worker/friend Jeni shocked me by having Casey stay up on stage and share some of his story with the entire school!!! Of course, I was crying happy tears, and so were many other adults...including someone who works for the Children's Miracle Network...which leads into Media Blitz; Experience #3 that is happening tomorrow. More on that later...here are pics from event #2!!!

Just Pictures....

2009-04-19T21:49:00.001-07:00

But aren't they cute??????

Birthday Brunch with Cara and the kids

Keeping busy while waiting for our meal!

Aubrey playing Mommy to neighbor baby in the park

Easter Party #1 at the golf course

A cute little somebunny

Hangin with the "hero"

Brooke and Casey...the lovebunnies!

Dying eggs (which we never hide..or eat...but it's fun!)

Searching the house on Easter Morn

Easter Party #2 at the Niello's. Yep, I dressed him in a sport jacket!
This was just the dessert table!!

Looking at a wild turkey in the yard. Thank goodness we were having ham that day!

Wearing MY Easter Dress from 31 years ago!!

After Easter Egg Hunt #3

Happy Easter Everybunny!

Pictures Soon!

2009-04-16T22:24:00.001-07:00

Sorry I haven't posted the ADORABLE pics of my kids on Easter. We went to the local golf course on Saturday for an Easter party, then to my sister-in-law's family home on Easter. It was a great weekend, even though Casey was (is) still recovering from his burst eardrum.

A very busy, but very fun weekend with lots of photos.

A very busy return to school. We are in the home stretch, less than 40 days to go.

A very busy upcoming weekend...a bridal shower for Kate. Being a bridesmaid I have to do more than just show up!

Pictures soon...promise...in the meantime, if you need a few good stories, visit Stellan's Page, Moriah's Page, or Paul's Page.

No Break During "Break"

2009-04-11T00:17:00.000-07:00

Well, it's a good thing we had a chance to celebrate my b-day early in the week, because the rest of Spring Break has been EXHAUSTING!!! We had one good day of weather so far...Monday. We took advantage of it and went to the park and had a great time with our neighbors. However, as soon as we got back, Casey starting coughing with major wheezing in between coughs. I assumed his asthma was acting up...got out all the different inhalers, nebulizer treatments, etc....then forgot which ones I could combine and such. I used one inhaler, but it didn't help, so off to the pediatrician we went on Tuesday!

Dr. M thought it sounded more like stidor (croup) so we stopped the inhalers and he was given Decadron in the office. His lungs sounded clear, no ear infection, no temperature. HOwever, I did mention that he has been having a hard time listening in the last few weeks, and has even told us that we are "talking to quiet". They did a hearing test and sure enough, he failed in both ears! Guess he has an excuse to be ignoring me.

Since Dr. M thought he was coming down with something, he said we would just check his ears once he's well. Fast forward to Thursday morning. He comes downstairs, sits on the couch, and said, "Mom, I have goop in my ear." I look over and his ear is pouring out bloody pus!!! Back to the doctor we go...his EARDRUM had BURST!!!! Seriously, this is a VERY painful thing, yet Casey didn't cry once, or even mention the pain. What a rockstar! Now we are on oral and ear drop antibiotics. And let me tell you, this is a gross and messy medical issue. I am constantly carrying around wipes to catch the goop before it runs down the side of his face!!

And of course, now Aubrey is looking like she's not feeling well. This whole week she has acted like a newborn...wanting me to hold her CONSTANTLY. Although I love all the cuddle time together, it's hard to make their meals with only one hand! The girl is almost two. Good thing she doesn't weigh much.

So, I am very happy to have had this week off from one of my jobs, but man am I tired! Add to all this is the fact that we had horrible rainy weather all week, so we were stuck inside. Until I made up a new game called, "driving adventure". We got in the car so they couldn't fight over toys, or even reach each other, and we drove along the backroads near our home and saw goats, turkeys, cranes, cows, horses, sheet, barns, coops, etc. Then we went to the pet store and looked at puppies, fish, birds, bunnies, hamsters, etc. My kids have no idea you can actually buy the animals!!
Okay, I'll end this long post by saying, "Happy Easter"! I promise to upload pics from our Easter events that are planned to start tomorrow. And, I'll fill you in on the "Media Blitz" that Casey will be starting soon.....:) Let's just say the Jimboy's ad was just the beginning!

Early Birthday Sweetness!

2009-04-05T00:38:00.000-07:00

I'll start out by saying...I love my birthday. I DON'T love being a year older, but I love that I was born at such a great time of the year.....my birthday almost always falls during Spring Break, so as a teacher I get the week off for my birthday. My birthday is right after daylight savings, so it feels wonderful to be in Spring. My birthday is a reminder of how many people care about me, and wish the best for me.
My true birthday began almost an hour ago, but it really started on Friday, when my wonderful class of 5 and 6-year olds surprised me! I opened the door to find 20 sweet little faces "hiding" and jumping up to wish me a happy birthday...standing next to a sign that included their handprints. I immediately started tearing up, and I'm not sure why. I think that the surprise, and the fact that the parents went through the trouble to make is special was touching. And I think for the first time, I realized just how lucky I am to be able to celebrate another birthday. Only a few months ago, my health and my life were up in the air...6 months later I am still amazed that I had BRAIN SURGERY, and feel GREAT!!! That is a birthday present in itself!
But apparently that wasnt' enough for my class...they had to spoil me. Below are pictures of my goodies, just from school. They made a water pitcher with their fingerprints that turned into animals, filled it with flowers, and wrote me sweet birthday cards (because I taught them to write so well :)). My co-workers got me giftcards to eat, drink, and be merry!
But, a VERY special gift was hand-delivered to my house today by one of my students. Check out that cake!!! My little J.Z. and his mom made me this beautiful 6-layer cake from SCRATCH. He delivered it with flowers, and a beautiful, huge home-made card. Once again....fighting back tears! Especially as Casey and "J" shared their scars and hospital experienes.

Truly a birthday to remember...before it even began. I love my class of kiddos...and I love my life!

All of my kindergarten goodies

What a masterpiece!

Seriously, this is 7 layers of homemade goodness!!

A very, very, VERY special student!!!

Never a Simple Solution

2009-04-01T20:10:00.000-07:00

It's beginning to look like Aubrey is on the same path as Casey as far as ear infections are concerned. Not only did she have a double ear infection, but yesterday she developed a rash. Mike took her to the doctor today and confirmed that she had an allergic reaction to the Augmentin, which is in the penicillin family. So, we are already on to another antibiotic, and we have one very unhappy almost-two-year-old.

Her fever is gone, but right about the time we noticed the rash yesterday she became extremely fussy, and it really escalated tonight. Honestly, I have NEVER seen her so upset...like she was truly in pain. She was literally unconsolable; didn't want to be held, didn't want to eat, didn't want to do anything. It was hard to see her that way, and not really understand what could be causing so much pain/trouble. Hopefully once this dose of meds has kicked in she will wake up in a better mood. After all, she was asleep before 7pm tonight!

On a totally different note, I have recently found a blog with a little boy whose heart journey is LITERALLY making news all over the world. And, they live very close to my birthplace. Check out the amazing places Stellan's name has been spotted, and read the news story by clicking here

Spring Fever(s?)

2009-03-27T21:45:00.000-07:00

The weather is beautiful, but the health in the Dyke household is not. This time it's Aubrey's turn to take the stage. She had been acting a little emotional and cranky the past two days, but always got over it, so I thought it was all due to missing her daddy. But today when I got her up to get ready to go to daycare, a temp of 102.5 put it all into perspective.
The poor girl had a green nose, a temp, no appetite, and no desire to do anything! I am pretty sure she has an ear infection, if not double, but that was not confirmed today. Because UC Davis Health Offices were closed today. I am a HUGE fan of the UC Davis Children's Health System, but what a bummer to be closed the day I need them for my "healthy" child. Ironically, they are open tomorrow and Sunday, so we opted to wait and get her in to the weekend clinic.
I would love to think that Casey will escape this round, but I am preparing for it as much as I can. Our family was planning on attending Max's Miracle Ranch tomorrow, but we will have to see how many of us are able to attend.
Once again, things aren't perfect, but they could be much worse. We are thankful that we are experiencing "normal" illnesses.

Spring Has Sprung!!!!

2009-03-22T21:59:00.001-07:00

What a great weekend! We started out on Friday with the temp in the high 70's. Although it rained off and on the rest of the weekend, it didn't stop these kids. Here's what we packed into this weekend...
1. Sports Camp on Saturday for Casey
2. Haircut for Casey-even though the place we always go to was closed due to eviction!!!
3. Playdate with neighbors on Sunday
4. Visit to park on Sunday
5. Visit from Aunt Cara, Grandma and Grandpa on Sunday for Mike's tacos and enchiladas
6. Lots of outside playtime

Here are some pics from the weekend, not in the correct order of events....you can tell from Casey's haircut!

Batter Up!

Cheeseball!!!!

Just Chillin'

This girl is fearless. At 20 months, she can climb the "ladder" to the slide by herself.

Aubrey and Grandpa, and books...her new favorite!

Let's not forget about Koa...his allergies are acting up due to the Spring!

Sports Camp...Casey decided he "Likes soccer but doesn't like being the goalie"

Rewind to Tuesday... Coming down the stairs to find out the Leprechauns caused all kinds of mischief!

Better!

2009-03-15T15:48:00.000-07:00

Sorry to our loyal followers...I know it's been a while since I posted. Thankfully, the kids are better, and much less medication is being administered right now! So it's back to business-as-usual, with a bit of Spring fever added in. The park that is about 100 steps away from our house has FINALLY opened, after waiting 3 years, and the weather was great this week, so we had to visit a few times. Casey is still loving school, and is excited that next year he will be going 3 days a week. Aubrey is still in love with Dora, and is full of spunk...even when she's sick! They have a love-hate relationship going on right now, which takes a lot of work on our part to minimize the hate portion :)

Here are some random pictures of cuteness, taken with yet another new camera. Since Casey left the hospital on December 19th, we've bought and returned two. The one we bought right before our trip to the snow worked pretty well, until it got run over by a car in Truckee. So, hopefully this one is here to stay!

Not Better...and Add One More!

2009-03-05T22:20:00.001-08:00

We now have both kids sick, which is not a shock if you know how much Aubrey loves her brother. However, things don't look so pretty in our house right now. Every inch of counter space is occupied by medicine, or the information regarding the medicine! Mike has been home since Tuesday, since I am out of sick days, and is getting worn out playing Mr. Mom. In fact, he is catching the bug himself....
Casey's fever has stayed around 103, without Tylenol, so both kids went to the doctor today. Casey's asthma is really making things difficult for him. He is constantly coughing, and can't catch his breath in between. So, the doc has put him on 5 additional meds, including nebulizers and Robitussin with codeine (wish I had some!).
Aubrey's fever isn't as high, but she obviously has the same virus. She walked away from the appointment with one med.; eyedrops. However, they tested her for RSV. If it's positive, they will assume Casey is positive, and put her on some of the meds he has.
As sad and stressful as this is, it is also amazing in it's own way. My son is clearly very sick, and I can't promise he won't be admitted to the hospital to control his asthma. But, the Fontan surgery has made him so much stronger. At this time, his oxygen saturations are still in the low 90's!!! Unbelievable! 14 months ago he had RSV, and had to be admitted to UC Davis on December 24th...hopefully this time these kiddos can stay together at home!

Okay...someone has woken up coughing...looks like it will be a long night!

Bad Fever, but Good Cardio Appt!

2009-03-03T21:20:00.001-08:00

Those two things don't usually go together, but that's the story for today. Casey had a scheduled cardiology appointment today. However, last night when I put him to bed, I could tell he was getting a fever. I checked his temp at 10pm and it was 103.5!!!! Not good, but not the first time we've been in this position. When this kid gets a fever, the mercury rises pretty high! I gave him Tylenol, and let him sleep since he had an appointment in the am.

Mike took him to cardiology, and by the time he got there, there was no fever. They did an echo which looked great, checked his vitals, and poked around to see if they could find the cause of the fever. All looked good, and if all stays good we don't have to return until June! They also took him off two more of his medications...the two he doesn't like, so that will make the morning medicine routine much easier.

Of course, by the time he went to bed tonight, his fever is back up again, but I am hoping it's just a quick virus that will work itself out. It's a bummer he is not feeling well, but we are still just so happy that his post-Fontan status is so good, and it is amazing to see how much energy he has these days.

We are also reminded of how thankful we are because of the little gal that joined the others in heaven today. Although we have never met the family, we join them in saying "Goodnight Gracie G!"

Casey's Fan Club

2009-02-25T21:32:00.001-08:00

Strangers realizing it's him in the picture
Friend Lauren at Jimboy's in Folsom

Aubrey gave the poster a kiss before this photo!

A co-worker, Shari who we ran into in Roseville

The proud boy!

Rebecca and I, after a pedicure...

Fellow Heart Friend Drew!!! in Citrus Heights

No Autographs Please!!!!

2009-02-19T21:46:00.000-08:00

Casey is a star!!!! This is one of the life-size cut-outs that are in EVERY Jimboy's Tacos locations in Northern California. All except for the one that is closest to us! The Vice President of Jimboys delivered one of these to me at school today. Right now it's in our staff room, but after that...it will be ours forever!

So, here's the story on the Children's Miracle Network. The Radiothon in Sacramento started TODAY, and goes through the weekend. You will hear about it on almost all of the radio stations around. Bring your kleenex because many of the patients and their families will be sharing their stories about their kiddos living a life in the hospital, and some of the wonderful things that UC Davis Children's Hospital has done for them.

The owner and founder of Jimboy's is a major contributor to the Children's Miracle Network. He grew up this area, and lived in Fair Oaks, off of Illinois Blvd for many years. Not only is he passionate about tacos, but he is also a world-famous chili cookoff winner! What a guy!

For the rest of the weekend, he is offering "Miracle Meals". When you buy two Miracle Meals, you will get $2 off. One of those dollars will go directly to the Children's Miracle Network. So you get great food, and contribute to a great cause! Just remember not to go to the Jimboy's by the Galleria, they are the only owners who aren't part of the corporation, and they aren't participating in the Miracle Meals. Oh, and just to be clear...we are not receiving ANY type of compensation for this. Casey's just here to spread the word!!

SNOW!!!!!!!

2009-02-15T16:30:00.000-08:00

I am posting from a beautiful house in Truckee, California, watching gigantic, soft snowflakes continuously fall from the sky. It is the first time I have been in the snow in over 5 years, and the first time my children have been in the snow in their lives! We have been having great food, great fun, and have made great memories this weekend. As much fun as we're having, we hope that we are able to get out of here as scheduled tomorrow!! Right now the snow is falling at about an inch an hour....

More snow pictures to come!!

Let the Baking Begin....

2009-02-09T21:12:00.000-08:00

Each year since Casey has been born, we shower his cardiology team with treats to celebrate Valentine's Day. However, this year I've got to make the goodies look really great because I am giving the UC Davis branch of cardiolgists treats on behalf of our support group! Before Casey, and Hearts of Hope, Valentine's Day was just a "Hallmark Holiday" that my husband and I didn't care about celebrating. However, the week of Valentine's Day is also Congenital Heart Defect Awareness Week, so it is a major celebration for our family. It is also a week that I try very hard to inhance awareness of CHD's. For example, did you know that CHD's are the number one birth defect in children in the US????? Every 15 minutes a child is born with a heart defect!!! Yet sadly, there are still so many professional, educated, wonderful people who don't know much about this issue, and how little funding it receives in the medical world.

So, be aware, and help spread the word! HAPPY HEART WEEK!!!!!

Day One: Lots of Baking...tomorrow I frost!! This doesn't include another cake in the fridge, and the other goodies I want to create for our weekend in the snow coming up!!

And of course we had to make a treat for Casey's Valentine's Day Party at school!

PS....Once again, we are having camera issues. Our replacement camera was returned, because we didn't like it. The replacement's "replacement" is a stinky one too, so until we get this figured out, there will be minimal Dyke family footage. Sorry!

Go STEELERS!!!!

2009-02-01T16:52:00.001-08:00

That's what we're thinking right now as I blog while watching the Superbowl. We were supposed to be at a party, but Casey has a fever, so we're hanging out at home. We're still having fun, and I can say this may be my first Superbowl where I drove to the store with the car windows down! Those of you who are hating me while shivering can make me eat my words when we are forced to let our lawn die, or take 2 minute showers due to our water shortage.

Not sure what is going on with Casey, but I hope it goes away fast because Mike is gone a lot this week! He had his four-year old well child check-up on Tuesday and everything looked great. He is 3'4'' which is the 61%tile, and weighs 35 pounds which is the 46%tile. Good numbers!! And, just to make me even happier, they didn't worry about measuring head circumfrence!

I have NO idea why it's taking so long for his photos to be up on the radiothon website, but I guess they want to make sure it looks perfect!

Aubrey hasn't caught this bug yet, maybe because she just finished the round of antibiotics for her ear infection! She is talking more and more each day, and now answers the question, "How old are you?" by putting her finger up and saying "one", although it sounds more like, "awaaaa". Maybe that will be my response when people ask my age!

Back Into the Swing of Things

2009-01-22T18:59:00.000-08:00

For any you that have tried to see Casey on the website promoting the fundraiser....the pictures are not up yet, and I don't know when they will be! However, I did talk to the VP of Jimboy's Tacos yesterday, and he is going to see about giving us some duplicates of the ads they create.

Just keep checking the website at http://www.sacradiothon.com/ and hopefully he will make his debut soon!

Casey returned to preschool today for the first time since Halloween, and loved being back. His teacher said he acted like he hadn't been gone at all! He was due to start last week, but this past Saturday, both kids ended up at the doctor's office because of a bad cold. Aubrey had an ear infection, but both of them had clear lungs. I can't believe how much more easily Casey tolerated a bad cold since his surgery. A cold like this would've had him in the hospital previously.

Other than that, we are just busy being a normal family! Mike and I working, kids at daycare/preschool, and busy weekends. :)

Here are a few pictures of Casey's meeting with Jimboy....

Okay, I just realized it's sideways, and I'm too tired to fix it. Casey looks cute from any angle.

Obviously a shot taken from below. Not by the photographer that was getting paid to do it!!!

Jimboy and his wife of 70 years, Jim Girl

Let's go get some tacos!!!!!

Almost Famous...

2009-01-14T21:43:00.001-08:00

I wanted to give Aubrey her turn on the blog before I post pictures of Casey's big day yesterday with his photo shoot with Jimboy for the Children's Miracle Network. They promotional leader said they were going to be posted on the website (www.sacradiothon.com) today, but I've checked all day and they aren't up yet.

So, back to Aubrey. To elaborate on her 18-month appointment, she is doing really well. She is in the 66th percentile for height, and of course the 93rd percentile for head circumference. To quote her doctor, "Her biggest issue is really just her weight." Her 21 pounds only puts her in the 9th percentile. However, the fact that she is on the charts is better than the past, and he isn't too worried now that she's made it back on her own little person chart. I'm still just waiting for him to label her weight as "lucky little gal"!

She is not light in personality, that's for sure. I call her the little diva. She is learning more and more words every day, and has recently become a Dora fan, exclaiming, "Gorahhh" every time she spots her. She seriously doesn't act her age. All of Casey's toys I saved for her that are age appropriate hold no interest for her. She wants to color with markers, play with little tiny things, carry around her own tube of chapstick, and put lotion on herself after her SHOWER. She also has decided to beome very picky about which stories we read to her at bedtime, but requires us to let her keep at least three books in her crib while she sleeps...along with at least 4 animals/blankets. I guess it really is a good thing she's little!

How can you have a weight issue when you climb up on the table to take a drink??
There's more hair, soft ringlets in the back that don't show up in the pictures

She's probably eating a snack that she stole from her brother

For the record, I love this jacket, and this dress, but I was NOT the one to pair them together!

Still a snuggler, even at Casey's birthday party

So Much To Say!!!

2009-01-09T22:44:00.001-08:00

My first goal was to post on Aubrey's 18-month appointment. However, the pictures aren't uploaded on our computer yet, and it's really late tonight so it will have to wait. In a nutshell, she is doing great, has lots of words, is a little diva, and is FINALLY heavy enough for us to legally face her forward in her car seat.

As for me, I had an appointment with my neurosurgeon yesterday (Tuesday), with an MRI preceding the appointment. For some reason, I was much less nervous than the previous MRI's. I even opened my eyes and didn't freak out when the "catcher's mask" is put over my face before rolling me into the tube.

The results looked great. Dr. Boggan said that if you just looked at the pictures, they might look worse to the "average" person, because instead of an unknown abnormality, I have a large empty space. Literally, I have a hole in the head!!! However, I have been feeling great lately, and the only time the dizzy, light-headed episodes show up is when I am hungry. Since the tumor tissue came back negative, I don't have to go back to neurosurgery until JULY! Yahoooo

But, there is something that made me even more elated today. When I got home from my first full week of work, I had a message from UC Davis. A little scary when you think of all the time we've spent in that wonderful hospital in the last few months. My fears were quickly put to rest when the caller informed me that Casey has been selected as the POSTER CHILD for this years CHILDREN'S MIRACLE NETWORK RADIOTHON for UC Davis!!! Can you believe it? Next Tuesday, my little miracle boy will be in a photo shoot with another UCD pediatric patient, as well as Jim Knudsen, who is 93 years old, and a major financial supporter of the Children's Miracle Network. Not to undermine the fact that he is the founder of the best taco place on Earth...JIMBOY'S TACOS. Seriously, it must be fate. Mike and I have been obsessed with Jimboy's Tacos for almost a decade, and Mike has almost perfected the replication of the Jimboy Taco. Yet this coming Tuesday, I will have the honor of meeting the main man himself, and getting the true answers to their wonderful product. Not to mention that Casey will look adorable!!!!!!!!!!!!!!!!!

Happy Birthday Casey James!!!

2009-01-04T14:53:00.001-08:00

CASEY IS FOUR!!!! Happy Birthday!!!!

Casey at 5 days oldCasey at One Year

Casey at Two Years

Casey at Three Years

Today....Casey at FOUR YEARS, playing some tunes at Mel's

Frosting his own cupcake
Soaking up the limelight

Happy kids, happy birthday!!!!

Every year, as the holiday season comes to an end, I get a little bummed. It's still winter, cold, rainy, etc. However, this feeling always goes away shortly because I get so excited to celebrate Casey's birthday. And I love that his birthday is just after all the holidays, so that the decorations can be down, the lights put away, and his birthday is a celebration that stands on it's own. He is a special, amazing, wonderful little boy who deserves the day to be his.

So for his big day, we started by getting smoothies. We then went to Toys R Us so that he could pick out his own gifts this year. He chose two cars from the Cars Movie (big shock), a pair of binoculars, and another alphabet puzzle. Although we tried to peak his interest in other things, he was sure those were what he wanted. After that, we headed to Mel's Diner for a birthday lunch, where kid's meals are served in a cardboard car! He played a song on the jukebox, got a balloon, and got a giant bouncy-ball from the machines, as well as a gumball. At four years old, he had a very successful first experience with chewing gum. He was so happy chomping on it all the way home, and about 30 minutes later he decided he was done and threw it in the trash. What a big boy!!!

The rest of the day was spent relaxing, watching a movie, having a quick visit from Grandma and Grandpa, and then a treat for dessert! Then we made sure to put them to bed on time because tomorrow this family is scheduled to go back to the real world. Tomorrow I will be going back to work for the first time since all our medical maddness began in September!!! Casey will be going to daycare for the first time in two months, and even Aubrey has had a break from daycare for about 3 weeks. Although I am excited to return, and get our family back on a regular schedule, I'm sure I'll be a little less enthused at 6am tomorrow morning. However, we have a very happy and healthy family right now, so we couldn't be more thankful for all the time we've had together.

Pictures!!

2008-12-29T22:51:00.000-08:00

Finally, here are the pictures from Christmas. I was afraid I wouldn't get them posted before the new year!

She really likes her present from Aunt Lisa, you just can't tell by her face!

What a smiley little guy these days!!!

See what I mean???

I promised, I've been nice Santa!

Cookies for Santa, cheese for Santa Mouse, and then outside to sprinkle reindeer food...

Santa's Little Helper

One of the many toys that make noise....

The Red Road Ripper he's been asking for from Santa!

Appetizer Throwdown Contestants iwth their presentation (notice my spinach balls laid in the shape of an X-mas tree on a bed of greens)The little chefs in their own kitchen delivered by Santa

Throwdown winner, and keeper of the champion apron...until our next contest!!

Merry Christmas!!

Casey's best bud comes over to help play with all the new toys!

Pictures Coming Soon...

2008-12-27T21:31:00.000-08:00

Sorry I don't have any Christmas pictures to post yet. Our new camera is working, but now the program is saying we don't have any room on our computer to download them...

We had a wonderful Christmas. I was just so glad to have Casey home, and so happy to see him excited about leaving out cookies for Santa, etc. Santa left both Aubrey and Casey a play kitchen, already assembled (thanks to all our guests and Mike staying up late), and lots of other toys, games, etc. I was very excited to get a laptop from Mike! Now I can blog from the comfort of my couch!

On Christmas day, we re-created the Food Network show "Throwdown with Bobby Flay". We had an appetizer throwdown. There were four entries, and we had to keep the name a secret, and it had to be something we've never made before. I made up score sheets and everything! The entries were; Scott's Seafood Shrimp Potstickers, Spinach Balls, Brie and Prociutto Crostini with Fig Jam, and Homemade Cheddar and Smoked Almond Crackers with Garlic Dip. The winner was....Mike with the potstickers!!! I tied for second place with my sister for my Spinach Ball entry (Thanks Keri H. for the new cookbook!). It was a great time. We think our next throwdown is going to be soup. I may choose to just be a taster for that one.

I'll post pictures as soon as I can of all the festivities. And, tomorrow (28th) Mike and I are going out for our anniversary!!! We have been married for six years and in that time we have lived in three houses, had two children, dealt with Mike being employed by 4 different companies, been to the hospital at least 20 times (including the birth of my kids!), watched our son have 4 heart surgeries, 3 heart caths, and 2 minor surgeries, and made it through my brain surgery. I would say all that deserves a night out!!! Thankfully "Aunt" Katy, one of my best friends is coming over to babysit the kids so we can have a date!!!

Post-Op Appointment, Hanging Out, and Christmas!

2008-12-23T23:34:00.000-08:00

Okay, so we replaced our digital camera, and have REALLY cute pictures and video on it. But, Mike is now asleep and I can't figure out how to download them onto the computer. Sorry for the lack of pictures, they are so cute with my two PINK-lipped kiddos.

Casey's post-op appointment was Monday. Aubrey, not to be outdone by her brother threw up in her sleep again on Saturday night. However, still showing NO signs of illness otherwise, she had a good night on Sunday, and accompanied us to Casey's appointment on Monday. His appointment went well...everything is going smoothly...sats and color look great...meds will stay the same for now (8 of them!)...he can go back to being a regular, preschool, daycare kid...just no hanging from his arms or being picked up under the arms for a few weeks so the wires holding his chest together don't separate.

But of course, life is full of curveballs. Literally, the minute we pulled into the driveway from his cardio appt, he starts getting upset, saying his tummy hurts. We have him go to the bathroom, and his bowel movement is fairly normal. Then two hours later, he's crying again. This time it's pure gas. Another hour later, I put him down for a nap, and a few minutes later he's crying. His tummy hurts he says. He goes to the bathroom and it's VERY loose. For those of you who don't have heart kids, you are probably DONE with me discussing my son's bowel movements. But those of you out there whose children are Post-Fontan know what I was scared of...PLE; Protein Losing Enteropathy. I'll spare the details and just say that I emailed his cardiologist, googled it, and have come to the hopeful realization that it was probably the same bug Aubrey had, just in a different form.

As of today, they both are doing great. Aside from vomiting in the crib on Fri. and Sat., and lose bowels yesterday, you would never know they weren't 100%. It just amazes me that 3 weeks ago today, my boy had his heart cut open. If you didn't know him, you would NEVER guess by looking at him that he had a major procedure. Heck, my surgery was 3 months ago, and everyone with fairly decent eyesight can tell just by me putting my hair behind my ears!

The only thing we're working on is CHRISTMAS!!! Since his surgery left us wondering if we would be home by Christmas, we didn't talk a lot about it at UC Davis. However, having the children's ward decorated so beautifully, and getting presents multiple times a day while there, it's hard for an almost-4-year-old to understand the concept of Christmas. He thinks it's already come, and Santa didn't bring him something. When I turned on the Christmas decorations tonight, he told me it was "summer". But then he talks about needing to catch snowflakes on his tongue, and make snow angels...which has never happened considering it doesn't snow where we live.

But it is still a wonderful thing to be home. It makes me so happy to see him dancing around, engaging with Aubrey, and discussing his surgery. In his world, the only thing he remembers is having, "two tubes from my surgery, and now I have no tubes", while lifting up his shirt to show you how proud he is that they are gone! And so are we...MERRY CHRISTMAS!!!

At Home

2008-12-20T14:41:00.001-08:00

Our Thursday discharge went smoothly, and we arrived home to a wonderful banner and balloons made by our neighbor. The only bump was trying to get one of his many perscriptions filled, which finally happened on Friday.

Casey has really enjoyed being at home, and is doing well. He is happy and full of energy! And, it's so different to have him not get short of breath as easily. Wonderful. When he takes his shirt off he always exclaims with pride, "Look, no tube!" His scar from his heart incision looks AMAZING, you would never know surgery was only 2.5 weeks ago. He still has a stitch where the 2nd chest tube was placed, and a rash all over from the tape, but it's getting better. The only thing that causes him trauma is taking a shower. He wants to make sure we aren't going to touch his chest, or put soap on it.

When he has a little pain, or his stomach doesn't feel 100% (probably from all the meds) he says, "I think I'm still a little sick. I have to go back to my hospital in my same room." SO CUTE!

Aubrey threw us for a loop last night. I went to check on her before I went to bed, and she had thrown up in her crib!! Nasty, nasty. So, we had to change her, the sheets, and all her stuffed animals. Luckily she went right back to sleep. Not sure when it happened, and what from, but she is acting just fine today. Other than that, she is happy to have us all under one roof.

Unfortunately, our camera broke 2 days before we left the hospital, so we had to run and grab a disposable one. That means I can't post the adorable discharge pictures of him carrying his balloons out of the hospital, and saying goodbye to the playroom, and all the Christmas trees.

And how's this for timing??? While going through a weeks worth of mail after returning home, I get a bill from UC Davis for MY surgery! Compared to Casey's it was a total bargain for my insurance company at $115, 328 , but still not the best piece of mail to get when returning home, since they think I owe part of it!

Propped up during a nap with about 1/8 of the stuff he's been given.

A visit from the CHP with more toys.

Look at how cute he is! Can you believe they didn't use the footage for TV?? This is the last picture taken (by a staff member) before the camera broke. So, at least it's not my fault!

Post-Op Day 17 DISCHARGE!!!!!

2008-12-18T14:37:00.000-08:00

We are being discharged today!!! We probably won't leave until evening, so I'll post tomorrow....from HOME!!!!!

Post Op Day 16 SpecTUBEular!!

2008-12-17T21:48:00.000-08:00

That is because Casey is tube free! He got his tube taken out today at about 1:30 pm, and is doing great! It's a completely different Casey than the last 4 days. He is running around, getting on and off the bed, skipped his nap, and is back to making the staff laugh.

There was only one minor complication of the day....Casey was given Versed before the tube removal, to ease anxiety. This drug is great. In fact, if everyone took it on a daily basis, there would be world peace. But, when it wears off, Casey becomes VERY sensitive and cranky. It was wearing off right about the time that some volunteers came in to the playroom to do crafts with the kids. First problem was that there were about 8 adults in the playroom, and only 3 kids. I don't think Casey felt very comfortable about that. Second thing...one of the volunteers was Santa. Casey was excited at first, but then when he was done talking to Santa, he got VERY upset because Santa didn't give him a toy. For the last week, every day there has been a different organization that has come to give toys, blankets, etc. I think the little man is getting used to presents. So, for Santa to show up and NOT have a present, while Casey's Versed was wearing off did not go down well at all. Thankfully the wonderful Child Life Director helped us out and once Casey calmed down in his room, Santa (mind you this Santa was very tan and had an accent) brought him in a little something, and posed for a picture with him. Problem solved.

So, things have been great since then. He had a big group of visitors at this evening, including his sister who was so happy to see him, and vice versa! Hopefully tomorrow's chest x-ray will look great so we can get outta here SOON!

Post Op Day 14 &15

2008-12-16T19:55:00.000-08:00

Yesterday was pretty simple and easy, but Casey was not very excited about anything, and didn't really get out of bed until 9pm. However, the Chips for Kids Toy Drive came around and presented him with a set of Monster Trucks, so that made him happy. They took video of him for KCRA, but they chose not to use the footage of the cutest kid on the floor.

Today started out pretty well, but quickly turned stressful. Casey had a great night's sleep, and at about 10:30am, he wanted to go to the playroom. He walked all the way there, but then seemed to get very upset once we were there. He didn't want to play with anything, and started to cry. He was momentarily distracted when St. Paul's came for their toy drive and he got to pick out ANOTHER toy! However, it was clear after that he really wasn't feeling well, so we started back to his room. He had a very hard time walking, and was whining. When I got him back on his bed, he said, "OWWWW" and started crying. For the next 2 hours, he was grunting, drawing his legs up, crying, and kept trying to sit up. All the while, the two lame non-cardilogist residents kept coming together and trying to touch him, which made him scream even more.
Since he was taking such large breaths, we started to hear a whining sound coming from his tube when he inhaled! At first we thought there was a hole, which could be causing pain, but that was ruled out. Then, we thought he might have major cramps from being constipated. The long, stressfull two hours passed, and then he wanted to go to the playroom in the afternoon to decorate his gingerbread house. However, once we were there for about 10 minutes, the same sadness and discomfort started. So we headed back to the room...and thankfully he took a nap. We think that maybe the tube in general is just causing more pain at certain times, and the fact that the tape they have used is basically eating his skin away underneath isn't helping. This kid is allergic to almost EVERY type of medical adheisive there is, but of course they have to use something to keep a tube stuck in his chest. However, he has a bad rash on his entire torso, so he is not getting Benadryl to help with the itch, as well as all the other meds. I think that's a total of 8 meds....yikes.
The plan is to get him up again tonight to help his chest drain. If it doesn't put out too much fluid in the next 12 hours, they will discuss removing it tomorrow. Cardiology is anxious to get him free of "leashes" and see if we can get him home! Me too!

Post-Op Day 12 & 13

2008-12-14T22:04:00.000-08:00

Sorry I didn't post this weekend. I came down with a fever and a bad cold on Friday, and Mike has spent the night with Casey, while my parents helped with Aubrey. Nothing much to report, except that chest tubes HURT!!! We've been told, and have come to believe that they hurt much more than the incision made for his surgery. On Friday night, he needed a lot of morphine to keep him semi-comfortable. Saturday he only needed it once, and now today he has only needed Tylenol with codeine. Today he was a bit more talkative, and ate more than yesterday. He even took two walks! One was to the "family waiting" room to pick out some movies, and the second walk was to our PRIVATE ROOM!!! We now have a room to ourselves, with no chance of getting roommates. The new phone number is 703-8058.

It was great to spend some quality time with Aubrey this weekend. I can tell that she is feeling the strain of being passed around, and not seeing both her parents at home together. Today, she picked up a pair of Casey's underpants from the clean laundry and said his name! How sweet.

Here are a few pics of the last few days....

Decorating his own tree for his room (Uncle Mark was on duty while I was showering at Kate's)

Music time...Casey's favorite!

A visit from Smokey, the Folsom Police Dog

Back on the tube, and also O2. Yes, he's asleep, but he's still watching to make sure no one bugs him!

Post-Op Day 11-Tube is IN

2008-12-12T17:11:00.000-08:00

I am posting at 5:15pm, and the finally put the tube in about 30 minutes ago. It was a very hard day to be with my starving child who was begging for food, and not be able to give him anything. It was also hard because I was not eating or drinking in front of him. Needless to say, when Mike came at about 2:30, my sister in law and I made a mad dash for the cafeteria. As soon as we got down there, the Child Life Specialist came to find us, and tell us they were going to take him down to the Children's Surgery Center on the first floor. Thankfully, they gave him Versed when he got down there, and the entire procedure took only about 20 minutes. Immediately after putting in the tube, he has already drained 350ml's out of the tube! I think that I might want to get me one of those...what a way to lose "water weight"!

Post-Op Day 10-BUMMER

2008-12-12T10:33:00.000-08:00

We are not happy campers right now. First of all, the chest x-ray that was ordered at 6am was not done until 8:30 am. Unfortunately, the effusion has grown, so they will need to put in a chest tube. However, Dr. Raff, the surgeon already has two surgery cases today, and he had to start the first one before us, because the x-ray hadn't been done. His plan is to bring Casey down in between his surgery cases, but that means the earliest it will be is probably noon, most likely later. The reason why it is even more of a bummer than just getting a chest tube, is because he is not allowed to eat or drink. And he is NOT HAPPY about it. I don't know how many more hours we can entertain him if it doesn't involve treats or juice!! The remote-control Hummer that Uncle Mark got him seems to be working at the moment, but I'm sure it will get old in about 10 minutes. He is probably going to bother our new roommate, a one-month old who is here with dad because mom "laid him down too rough". But at this point, I'm done worrying about the parents of other patients!

If the chest-tube placement goes well, he should still be mobile, but he won't be happy, and will be in more pain. It's kind of a shock that he even needs it, because his energy level seems so high today. Today he is playing with his diabetic friend in the playroom, and got a visit from Smoky, the Folsom Police dog. Last night he was dancing and singing until 12am!! He has truly charmed everyone in the hospital, and has found a way for every specialty to spoil him, including the x-ray technicians. Hopefully he will still be in good spirits while the tube is draining this crap out of his chest.

Post-Op Day 9

2008-12-11T11:55:00.000-08:00

To tube or not to tube...that is the question. We will have the answer tomorrow morning. We went downstairs to radiology today for another chest x-ray. It shows that the pleural effusion has gotten larger. So, if it stays the same size, or gets bigger by tomorrow, Dr. Raff will need to put in a chest tube to help drain the effusion. This means that Casey will need to be sedated, and taken to the procedure room. It also means that he will not be very comfortable with the chest tube back in, but hopefully he will still want to move around and visit the playroom. It also means that we are not getting out of here in the very near future. He is grumpy at me t-oday, but has been enjoying himself so far. He is in the playroom right now for music time..then I'm off to get his favorite food from downstairs..pretzels...go figure!

We have moved to the larger side of our room, with a huge window. If I look to the far left I can see the capital building!! And, I bought a book of crossword puzzles, so I have that to keep my brain entertained. The -umber to our room is 916-703-8068. Last night we had a tiny roommate that was there for a sleep study to diagnose sleep apnea. Today I am worried about; my son, the baby who was in a car accident and was not in a car seat (because they were living in their car), which means that his parents cannot have contact with him, the little 2 year old that almost lost an eye to cancer, and the 3 year old boy who just got diagnosed with Leukemia. At least the ward is decorated beautifully for the holiday season!