Birthday Celebrations

Owen had a really great birthday weekend full of parties, wishes and presents! Just as it should be. On Friday, his real birthday, he woke up feeling pretty crummy. He didn't want to get out of bed and didn't want to open presents. After a mid morning nap, he was a new boy!

I told him he could open one present to hold him over until Daddy and Kamryn got home and it was a Mickey Mouse movie. We went back to bed and watched it for a couple hours. It was some good cuddle time.

Owen wanted "chichen and french fries" for dinner, but insisted on opening presents before going out. He made this cheesy face...
Then proceeded with opening his moomies (movies) and Jenga blocks.
We went to Red Robin because Owen likes attention. Surprised? Ha. We wanted them to sing, bring balloons and make a big deal. The food was a little bluck, but Owen ate two bites of everything at the table. He felt special and that's all that mattered.
We came home to sing "Happy Birthday" and he blew out candles a few times. Owen likes to get real close to the flames and the oxygen blowing out of his nose freaks me out. Kamryn's cupcakes were delicious! I know because I ate several of them over the weekend. On Saturday we slept all day and tried to make sure nobody was getting sick. We have so many family members coming down with Strep and the Flu that it makes me nervous.

Owen's Despicable Me party was on Sunday at his favorite park. He played in his favorite swing.. the same swing we play in daily.

The girls were being silly on the swings.. I remember doing this when I was a kid.

Owen rode his quad all over the park and thought it was awesome to get stuck in the sand and spin the tires. Do you like his helmet? It's Kamryns! He has a big head.

The best big sister ever!!

Nana bought Owen this Cars tricycle. He can't reach the pedals, but that doesn't stop him from scooting it all over the park. I don't think he got off of this most of the time we were there.

The kids blowing their dollar store blowers that fell apart. So much for being frugal.

We sang Happy Birthday a couple times! He LOVED his "bad bad day" cake! The bakers brought it out when we went to pick it up and he grinned ear to ear. They were so excited.

Here is our attempt at a family picture! Thanks to Owen's PT for taking this.

Owen is so loved and got lots of fun presents. My sister and Chris got him this cute Mickey Mouse rocking chair and he loves it! He got a little dino that bites your finger off.. from Auntie Kamri and Tony. A bunch of Cars cars from Grammy K. and Brant. A tag learning system from Jessica (PT). A "Sleepy Kittens" book from the Despicable Me movie from Auntie Sussy and his cousins. Lots of BUZZ and Woody stuff. He got a really cool buzz tent with tunnels from Uncle "Gog" and a buzz laptop from Grandma and Grandpa. He is a lucky, loved, little guy!

I love parties at the park because there is very little entertaining.. the kids have so much fun just running wild.

This is my Grandma swinging while Gigi pushed her.. my mom and Kamryn. I hope to be swinging when I'm in my 80 somethings.

As soon as we got home, the kids wanted to assemble and play with every single toy.

I love when Owen plays Wii.. he's such a techy nerd!

We had a lot of fun and I know Owen had a great birthday weekend! He is officially admitting that he is "tree" instead of "two'! It took a while to admit it. He would say "NOT tree.. TWO!" Now he's proud to be three!

Happy Birthday Mister Owen!!

Dear Owen.

Today you turned three. These have been three incredible years and I have you to thank. You changed me. You made me look at life in a whole new way. Every cuddle. Every smile. Every moment. I don't want to miss a single thing.

You came into this world on January 28th, 2008 at 10:58 pm. It wasn't the plan, but you were in charge. I knew I was in for a brutal labor and delivery as you had no intention of coming out.

We arrived at the hospital before noon with Daddy and sister. We were all anticipating your arrival. We knew you had a broken heart long before you were born, so we had a plan in place. The beginning of the plan was to get you to come out. After several hours of the doctors inducing labor, you were not happy. Your heart rate dropped with each mini contraction and I was far from the hard part. It broke my heart when the doctor suggested a csection, but I knew it was best for you.

You came out with the best personality. Calm, cool and collected. You didn't even cry until the nurses made you mad. They brought you to me and you were the most beautiful boy ever!
Daddy quickly scooped you away with the doctors and you went to the NICU. Daddy stayed by your side and captured your first moments on camera. I love these first photos as you were tube free for the only time in your life.

Kamryn couldn't come to see you because she was too young and we were in the middle of RSV and FLU season. She was heartbroken. Daddy showed her lots of pictures of you and she called you her "hip hop dude!" Little did we know that three years later.. that genre would be your music of choice.

After Mommy had feeling in her lower extremities again, I wanted nothing more than to come up and see you. You took my breath away baby boy. The doctors and nurses had already placed your lines and you were given lots of medications. I could have stood by your bed all day.

The first time they let me hold you was hours after you were born. The moment was bittersweet as I only had a few precious minutes before they were to take you via ambulance to the Children's Hospital NICU. I was going to have to say goodbye. I was devastated.

The next few days and weeks are a blur. I held you when I could and fell in love even more. You were such a champ through your first open heart surgery and I have never been prouder of you. You were so brave!

One month after you were born, we brought you home for the first time. Your big sister was finally able to meet and hold you. She had waited for so long. I never could have imagined the bond you two would have now.. three years later. You are so lucky to have each other.

The past three years have been nothing short of a miracle. You have a will to live. You love with all your heart and have changed the hearts of so many around you. Thank you Owen.

I hope your third birthday is one you will never forget. I love you more than words can explain. You say it's "BIG MUCH!" and it's that and so much more. Happy Birthday to our amazing boy!! We love you.

Strep

Strep. A positive test yesterday confirmed it. Achy, tired, freezing, and a sore throat have wiped this momma out! I'm already feeling better after just three doses of antibiotics.

A little story on how I did my part in raising CHD awareness...

I went to a new doctor's office yesterday. My regular primary care physician was booked until next Wednesday. Don't get me started on that. So, I picked a new one out of a hat, or insurance book. Out of two nurses, one doctor and two PA's in training, not one of them had heard of Hypoplastic Left Heart Syndrome.

My sweet husband stayed home yesterday morning so he could be with Owen. I wasn't about to take him to the doctor's office and expose him. When they asked for my medical history and family history.. I explained to them that everyone was fairly healthy, except Owen. The nurse said "What's that condition?" I told her and she said "you poor thing!" Don't ever feel sorry for me. I am the lucky one. I explained to her how awesome Owen is and I think she left feeling kinda crummy.

The doctor and his student PA's came in the room to tell me about my positive strep test. They did their exam and reviewed my medical history. Which is pretty minor. No right kidney. ACL tear in my knee. PCOS. Boring stuff. Then they said "What's Hypoplastic Left Heart?" My jaw dropped as this was a doctor.. don't they teach them this stuff in medical school? I let it slide and explained it to them. I also went a little further in explaining it's the number one birth defect and the most recent statistics. They were all staring at me in shock. One of the PA's was extra curious and asked further questions on the three stage palliative surgeries.. I explained in detail. I dumbed it down a little too. Don't tell.

They all continued to ask questions. I was proud to answer.

I know they probably won't see a kiddo with HLHS in their office as I was the only one under the age of 60 in the waiting room. I was just glad that they had their eyes opened to something new.

Now it's time to pray that the rest of the family stays healthy. Owen has open heart surgery in less than two weeks and I will be rescheduling if he even has the slightest sniffle. I don't take chances.

So far so good.

It doesn't matter how crummy I feel... tomorrow is going to be the best day. My little rock star is turning THREE and we are going to P.A.R.T.Y!! He deserves to have the most special day! His party is on Sunday with all our family and I'm sure he will be spoiled as much as he deserves.

I'll post lots of pictures from this weekend. The only photo that went with this post is one of me lying in bed and trust me.. it's not pretty.

One more bit of excitement (for me anyways).. we have family pictures scheduled with Rachael Earl on Saturday. She took our photos back in March of 08... you can see them here.

It's nap time.

Just Words

Owen's language has exploded the last couple weeks. He has always been pretty talkative, we just can't always figure out what he's saying. One day.. it just clicked! I plan to take a video of all his funny phrases, but I wanted to write them down before I forget.

Each night before going to bed, Owen must walk his big sis to her bed and tuck her in. It's totally adorable! He walks into her room, pulls her covers up over her and then he kisses her goodnight. As we walk out of the room, he says "I Love You BoBo.... go to sleep... night night." He then walks into our room, up into his big boy bed and crashes. It melts my heart.

Last night when Kamryn gave him one too many kisses, he said "otay... otay.... stop it bobo... I love u."

He loves to ask "What's that (insert sound here)".

He's been questioning "What?" on everything. It's very cute and not annoying yet.

He has discovered the purpose of the word "Yes!"

He loves to say "Dat Otay" and "what happened?"

He knows exactly what he wants and only that will do. Like when he wanted a Twinkie for breakfast. I knew he wanted it, but I said "not a good breakfast choice" (or anytime choice for that matter). Then we found mold on the Twinkie.. who knew those things could go bad? He still wanted it. What he really wanted was to squish the white center all over the kitchen floor and then to say "ewwww" and throw it in the "darbage".

He likes to clean up and say "I do it mama."

These are just a few of the things he's been up to and I love every bit of it. He is excited to turn "tree" this week too!! I can't believe it's been three years!!

Oh.. and guess who's a real walker now?? More on that in another post.

Sick Day

Today has been a sick day. Kamryn stayed home from school when she woke up with a swollen throat and headache. Owen has been his relaxed self, and took a really long nap. I enjoyed the long nap today and actually passed out with him for a couple hours. It was blissful.


Kamryn and Owen have spent most of the afternoon playing on their computer. Both of our kids are techy nerds! I'm pretty sure Kamryn ate breakfast and lunch at the computer desk too... that's her cereal bowl there.

It's just been one of those days.

I called to postpone Owen's preschool meeting with all his therapists and then had the genius idea to do it over the phone. I talked to each therapist for about 5 minutes and set all his goals.. it was so simple. Another major chore done.

Everything is falling into place for our upcoming trip to Stanford. We are on the "wait list" for the RMH. We were able to book a room at the Stanford Guest House for $64 a night, which is just amazing! The place that I get the portable oxygen concentrator from said to just pay for one week and keep it for as long as we need. Swweeeetttt!! Just an fyi... it is really hard to track down a portable oxygen concentrator on short notice (ie: at discharge from the hospital) and all we're going to want to do is jump on a plane and come home. This is just one less worry.

We have nothing going on this weekend. We will hibernate and stay healthy. Next week my little guy will be turning THREE!!! We have his party and family pictures scheduled... so much fun!

Life is just so sweet right now. Have a good weekend!

Feeding Therapy

Owen has had the same OT/Feeding Therapist since he was just a few months old. Connie has been here every single week. He went from not even letting a bottle nipple come into his mouth, to licking a baby oreo, to eating everything in sight. Or at least trying to.

Owen doesn't have a lack of interest in eating. He just doesn't know what to do with the food after he puts it in his mouth. For the longest time now, he will put almost any food in his mouth and taste it. He scoops it into his left cheek and stores it there until I scoop it out. We call him our little "chipmunk". It's not unusual to find a chunk of bacon from breakfast or chicken from dinner while brushing his teeth at night.

He loves the social aspect of eating and really loves to feed himself and try new foods. He likes foods that are spicy and savory. He has always preferred foods that require chewing and tongue coordination. He's never been a fan of pureed foods or soft foods, ie: yogurt, humus, baby foods. When given the option, he would eat steak and veges over fruits or dairy. He likes noodles of all kinds and beans... beans are his favorite!!

Our biggest challenge is teaching him to swallow his food. He loves to drink and swallows just fine. We don't have any issues with aspirating, thankgoodness. We can't figure out why he doesn't want to swallow his food after chewing it. We continue to work on it everyday and eventually, he'll figure it all out.

Another big issue with eating is his lack of feeling motivated to eat. He's never hungry and so he doesn't feel the need to eat, to become satisfied. His little tummy won't tolerate large volumes of food at once, so I feed him 2 oz of blended food (in his Gtube) every 30 minutes. This goes on from 8am to 10pm. In addition to this, I put him on a night drip from 10:30pm to 2am. No wonder I have no life. Ha.

So that's where we stand with feeding. I am so happy that Owen has a love of food. Healthy food. We are trying to reintroduce easy to eat foods. For example, I wanted to go back and revisit yogurt today while Connie was here.

He took a couple tastes and was okaaaay with it. He didn't hate it. He just didn't eat much of it. He doesn't like to get really messy, so we decided to challenge him.
We decided to play in the yogurt and have a little OT time. Owen drew circles, squares and lines in the yogurt.
He loved getting messy and we got a couple more bites of yogurt into him. I'm sure we would have had more eating success if I grilled him up a steak, but we really need to focus on swallowing.
After we washed up and changed his clothes. His speech therapist Sherene showed up with her two new grad students from ASU. Owen had four therapist there just for him. I could have disappeared and he wouldn't have cared. He was showing off BIG time. He pulled out all his therapy toys, shopping cart full of food and made them drinks in his play kitchen. He is such an awesome boy!

Owen is so lucky to have such fun therapists that give him so much love and attention. I have a really laid back style of parenting and I like his therapy sessions to be fun. Something he can look forward to each week, rather than stress about. He has come so far in such a short amount of time. This momma is proud!

Bowling

We have had a fun weekend! We kick-started the weekend with Kamryn's bowling party to celebrate the big 11!! She wanted to have a small party with three of her closest friends. On the day of her party, two of the party guests got sick. Instead of postponing the party, we decided to bring her best friend Elizabeth and her cousins joined us for the fun!

We started out at a pizza joint a couple doors down from the bowling alley. Bowling pizza is pretty gross. Anyway.. after wings, garlic knots, unlimited sodas and pizza.. we were ready for bowling. The kids bowled in one lane and the adults in the next. Let's just say that we won't be participating in any bowling leagues anytime soon. The highest score was barely 100, coming from Carson.

Kamryn and Connor rocked the leader board in their lane, but Connor came out one point ahead.
Owen got in on the action too! They had a little ramp for him to roll his ball down. He scored a 95, coming in second. Maybe we all should use the ramp next time!
In between turns, he was playing on the floor. G.E.R.M.S!!! I had a bottle of hand sanitizer that we all used. From the rented shoes, to the holes in the balls, I don't want to think about all the germs in the alley.
Rylee, Kamryn, Tatum and Elizabeth... I love that they are all going through that awkward stage. I think it's so adorable!
Owen loved all the balls crashing down the pins. He liked standing in this one spot because the air shot out from the vent right there. I'm sure it was awesomely filtered air too. More Germs.
After bowling, we headed to the arcade and the kids each got $4 on their "game card". No more tokens and tickets.. it's all digital.. on a little credit card. I was amazed at how long they played on $4.. I was thinking they'd be done with that within minutes. Owen really wanted ride on the motorcycle, but freaked out when it started moving. Kamryn jumped on to help.
The kids all played air hockey and then redeemed their "credit cards" for some pretty awesome rubber rings and candy.
It was already 9:30pm when we left and we hadn't even eaten cake or sung Happy Birthday. We decided to bring the cake home and call it a night. The cake turned out really cute and was super yummy. Then it went stale the next day, which is a good thing because I probably would have eaten it all. It was that good.
We sang Happy Birthday, for what was probably the 4th time since her actual birthday. She had a great time turning 11!!
On Saturday, we had a day with Nana. We picked up my Grandma and took her to lunch, then headed back to her house for a couple hours. She is starting to get Alzheimer's so there are times that I'm sure she doesn't know 100% who we are. She picked up a picture of Kamryn and said "who's this girl in this picture?" We had to explain it was Kamryn when she was four, and that we probably need to replace it with a more current photo. Ha. We took the kids outside and picked oranges off the six orange trees in her backyard! I love that my kids can have a relationship with their Great Grandma.

On Sunday, I woke up feeling ultra crummy. I didn't want to miss sweet Gabriella's 6th birthday party, so Owen and I gave them the heads up and we headed over to the park. We didn't stay long because I didn't want to get anyone sick, but it was so great to see how great she's doing! Gabriella had her heart transplant this past summer and is doing fantastic with her new heart!

Today is another day with the entire family at home We are relaxing and catching up on laundry. I saw "we", but what I really mean is "I" am doing the laundry. Tomorrow starts a new week and lots of appointments. I can't believe we leave for Stanford in three weeks. I have an Owen update coming up... this little guy is talking up a storm.. and he has LOTS of funny things to say.

An Interview with Owen

The weather could not be more perfect in the desert. We are spending most of our days outside, or in bed, as Owen prefers it. He has been such a couch potato this week and I hope it's just his little body fighting off the small cold he caught last week.

Kamryn is back into the swing of things after her long winter break (almost 4 weeks) off school. She brought home packets of graded assignments and everything is 100%. Her report card for second quarter was also perfect A's. She continues to amaze us with her smarts and drive. She is sweet 95% of the time and in the rare occasion that she does back sass, she immediately apologizes and says "I don't know why I just said that?!"

Owen continues with therapy. He is walking all over the place, although he still looks like an old man when he walks. He is walking. His speech is coming along and he has tons of words even if we don't understand them all. The other night he talked for over an hour without taking a pause and I couldn't make out one single word. I just laid in bed and listened to him babble and he was obviously saying something pretty funny because he kept laughing. He's such a silly boy.

Speaking of talking... here is a little video I found on Kamryn's iPod touch this morning. She was interviewing Owen from the bathroom. Don't ask. Ha. I was in the family room on the phone, try to tune me out. The video just makes me smile. I love how he is pestering Kamryn by turning the lights off and on. He does that to me all the time!

Owen's nose has been bleeding a ton lately. I'm sure it's dry from the oxygen.. does anyone else have this issue?? HELP if you do. I don't like to wipe it because it makes it worse. I am out of ideas.

My airline tickets are booked for Owen's surgery next month. I'm still working out a place to stay and the oxygen delivery stuff. Each day I get a little more comfortable with the idea of sending my little man in for open heart surgery. I just keep reminding myself that it's out of my hands. I'm sure as the date gets closer, I'll get all nervous and tense, but I'm just trying to enjoy the little moments right now.

Kamryn has her big birthday party on Friday and I finally found a Despicable Me cake for Owen's party on the 30th. We have family pictures scheduled for the 29th and coordinating outfits are on my mind. Life is simple right now. Just the way I like it.

Bikes

We had a fairly quiet weekend. We spent Saturday at Larissa's celebrating Christmas and Birthdays. Kamryn and the girls played fairies and changed their names. Owen rode on Connor's old trike and LOVED it.
He didn't use the pedals, but figured he could get around using his feet. Maybe it IS time for a bike. Speaking of bikes. Kamryn has a 24" women's bike and she has outgrown it. I don't know anything about bikes... but she definitely needs a 26" and I'm thinking a cruiser. I don't even know where to start when it comes to bike shopping. Sunday was spent in bed. Owen and I slept so much! It was totally necessary and we woke up today feeling great. In fact, Owen is walking circles around me as I type this. Today I asked him why he was so sweet and he said "Daddy make me sweet!" What about Mommy? "Nope.. Daddy make sweet."
Today I will clean my house because I desperately need to shampoo my carpets. It's been about a year since we got them cleaned. I ordered a new leather sectional the other day and I can't wait to get it. We've had the same couch since we were married 11 years ago.. it's also the same couch my parents purchased when I was about 8 years old. Out with the old.

I'm off to run errands with my sweet boy and then I'll put him to work around the house. Kamryn will be thrilled to have it done before she gets home.. she's not a fan of chores. As if that is a surprise. Who is? Okay.. maybe I am a little. I do like to clean.

Enough chatter. A pedicure is calling my name and Owen loves to chat with all the ladies at the salon. Later.

Birthday Invitations

Owen has been a little extra chill the last few days. He wants to watch "baby boo" (Monster's Inc) and "bad bad day" (Despicable Me), over and over again. He's snuggled up in my bed with his many red Snortys and wants to be left alone. I come in every 15 minutes to check on him and he gets annoyed. Especially when I snuggle him and say "You're SO FLUFFY!!!"

Since I have a little free time, I've been working on the kids Birthday invitations. Kamryn wanted to do a small party with just her two best friends. We are taking the girls out to dinner, a night of bowling, and then we'll finish the night with some ice cream cake. It's going to be fun! Here are her fun invitations I just whipped up in 5 minutes!

Owen is going to have a family party this year. Since he'll be having surgery 10 days after his party, I decided it was best to stick with an outdoor party where I can limit the germs. All of the party guests will be healthy or they can't come. It's harsh, but it's how it has to be. Owen really wants a Despicable Me birthday party and it's near impossible to find party supplies to fit his theme. For his invitations, I took a picture of the Despicable Me DVD cover, photoshopped the background out, and created this...

We have so much fun planned over the next four weeks before we leave for Stanford. I already booked our airline tickets and the hotel reservations are made. Carson will be with me for a few days and then he'll come home to be with Kamryn. I'll stay with Owen at the hospital and I plan to never leave his side. I'm that mom .. the one that never leaves. The social worker said there is a washer and dryer at the hospital and she already put in my reservation of a sleep chair. Don't be jealous.

I'm getting mentally and emotionally prepared. Everything feels right and I just know he's going to do great.

Surgery Date

I made the call and scheduled Owen's surgery date. February 10th!!!


I was first offered February 3rd, but I just couldn't do it. It was three years ago, on that very date, that I wheeled this little boy to the OR. He was only 7 days old and about to undergo his first open heart surgery.
Nothing could have prepared me for what I saw that evening. A baby boy, with his chest left open, on a ventilator. All I heard was how great he looks and how fabulous he was doing. I have faith that if we could get through those tough days, and the surgery that followed, we can do this.
I had a nice chat with Dr Stock today. He always has a way to put my mind at ease but certaintly remains realistic about Owen's situation. We remain hopeful that things will go smoothly and that he will have a quick recovery from this operation. Our ultimate goal is to get him to a 4th surgery late in the summer.

My stomach has been a ball of knots today. I am going to enjoy my kids' Birthday parties coming up and try to relax for our notsobusy month of January. Less stress. More fun.