It's Official

School is out and this little girl finished 4th grade with perfect A's!! We couldn't be more proud!
We went out to lunch and got pedicures yesterday to celebrate the last day of school! Kamryn has never had a pedicure at the salon and I created an addict. While sitting in the massage chair and being pampered, she said "this is THE life.... we should do this more often!" She knows I go at least once a month, and I'm pretty sure she won't ever let me go without her again!

Owen joined us yesterday... we tried to get his toes painted... he said "Noooo!"
Speaking of Owen...

I think he heard me on the phone with our Phoenix and Stanford cardiology teams yesterday. He woke up today with energy like I haven't seen in weeks! I'm hoping that he continues to feel like he does at this very moment. Playful, happy, scootin all around and we even drove to Tempe to have lunch with Daddy today!
We're looking forward to a long 3 day weekend! We have no plans... we're going to swim, take naps, watch movies and maybe even buy a new grill. I might take Kamryn's dance recital pictures because next week is recital week!

Tired.

Owen was up all night... sad. I checked his sats... high 60's. It wasn't awful considering he was upset. I changed his gauze because his gtube was bothering him, gave him some Tylenol for pain, some extra water, and a little yogurt with milk to fill his tummy. He woke up tired.

We took Kamryn to her last day of school.

After we came home I was excited and said, "let's play and watch Elmo!"

To which he replied "NO! Bup... Biiiii... Ni-Ni" (translation: No, I want to go upstairs, I want my Binki and I want to go night night).

He's not sleeping yet, but just cuddly. The same way he has been most of the month of May. I keep thinking he will wake up tomorrow and feel great! It hasn't happened yet.

I called Dr Stock to get him in sooner than June 22nd. He said to call anytime and he will get him in. Darn it. He went on vacation today. We set up an appointment for June 9th, and if he doesn't have a good day soon, I will take him to another one of the cardiologists that knows him well.

I call it momma's instinct, but something isn't right. It may just be that he needs an increase in medications. We haven't increased his medications since May 09. Between May 09 and Oct 09 we increased his medications by a lot! He has gained about 5.5 pounds in the last 8 months and so that usually would require an increase in doses. We haven't been able to make that change because his blood pressure has been way too low.

Besides... look at these doses...

Captopril 20mg - 3x day -- treats heart failure -- lowers blood pressure
Sildenafil 5mg -- 3x day -- medication for pulmonary hypertension (which O. doesn't have)
Aldactone 10mg -- 1x day -- used to treat fluid retention in heart failure -- maybe heart function
Carvedilol 5mg -- 2x day -- beta blocker used in heart failure patients and can lower pressures
Digoxin .005mg -- 2x day -- treats heart failure -- slows down the rhythm of the heart
Lasix 10mg -- 2x day -- diuretic to keep the fluid off
Asprin 1/2 tab -- 1x day -- blood thinner to avoid clotting

I just don't know where we go from here. We'll see Dr Stock on the 9th. I'll notify Stanford at that time if there is no change, or sooner if he gets worse.

He is just SO happy, even laying around all day. I'm hoping he'll perk up tomorrow with Kamryn home all day!!

Cuddly Boy

We've spent the day laying in bed. Owen just wanted to cuddle. He flopped his leg over my arm, put his cheek up against mine, and we listened to music on the laptop for a few hours. I loved it. Now we are downstairs working on some puzzles.... he can speed through them nowadays.

My little guy is so smart. So funny. So cuddly.

I know that he will feel better one day. He will be active and playful. He probably won't want to cuddle me for hours anymore.

I read of other kiddos his age, running around, getting into trouble. I sometimes wish he would just get into a little trouble!

His health has been weighing on my heart lately.

I just want him to feel good enough to play.

Last week of School

This is the last week of 4th grade! The last week is always full of parties, saying goodbye to your teachers, and final projects. It's also a time to look back on the year and to recognize how far you've come.

I was helping Kamryn study for her final tests last night, I was stunned. She memorized page after page of her study guide.. word for word. After cleaning out her desk, she brought home some of her art projects, writing assignments and journals. I love to look at all of her hard work in awe of how talented she is! I know she realizes how much potential she has, and I hope she never forgets it.
We are going to have a totally fun summer. When August comes, I will have to send my little girl back. She will be a 5th grader. I'm not sure how I feel about that yet. While I want to bottle up time, I also enjoy watching her grow from year to year.

Our Thursday

This is one of my adorable nieces Livvy. We watched her for the first time today. Owen loves the "baby". The truth is... she's not much smaller than he is and is already passing him up in gross motor skills. I often forget what a healthy toddler is like. I learned real quick. She was all over the house, climbing on the couch, climbing up the stairs, pushing around toys and chairs, playing peek-a-boo in the curtains, she was like a ball of energy. I was amazed.

Then I got a little sad. Owen tried to keep up at first. He followed her around showing her his toys. That lasted about 5 minutes before he took his first break. While she ate her entire cup of yogurt, he played with a spoon in his. When she climbed up and down off the couch, he just stayed put where he was. When she pulled up on the glass door, he pulled up to a knee and then sat. When she sucked down her entire bottle, he took a sip of juice. When she ran circles around the train table... he stood in one spot watching music videos on the laptop.
It hits SO hard on days like this. It's a hard reminder of just how sick Owen really is. We adore Livvy and all her energy and I sure hope that Owen will be able to keep up with her one day!

I found this poem in Kamryn's backpack yesterday. They had to write a non-rhyming poem and this is what she chose....
Those two have SO much love for each other!!!!

What's up with Owen lately...

It's about time I sit down and write a post on what Owen's been up to lately. The little guy is almost 28 months and he is constantly changing, growing and learning new things!

Up until a couple months ago, Owen wouldn't watch a stitch of television. Then "Yo Gabba Gabba" was the magic ticket to occupying him for 30 min so I could get a thing or two done around the house. I have to say, he dumped his friends Brobee, Toodee, Plex, Muno and Foofa in just eight short weeks. He's moved on. He has a new friend. He's furry and Red and Owen refers to him as "Mel-Mo". I can put in a 90 minute video and Owen is as happy as can be!
Owen stands up everywhere we go. He watches TV standing on the couch. He stands in his stroller. He stands on the stairs. He stands up in bed. He stands up at the sand or train tables to play. He doesn't stand without leaning on something, but he IS standing. It's about time he figured out that legs are meant for standing.

When he gets tired of standing, which is usually after a few minutes, he simply lays down his head or plops onto his bum. Usually he's slide off the couch onto the floor and start scooting, or he'll just lay like this for another 30 minutes while he recharges his engine. When he's in his stroller (which is when we go anywhere), he's been asking to "uh-ooott" (butt-scoot) and I usually have to tell him "not a chance!" The ground is filthy and I just can't get over how many germs are on the floor of a restaurant, the dance studio, the grocery store or anywhere else we happen to be.

Owen has had a super appetite lately. Before you get too excited... his eyes are bigger than his skills. When we sit down to eat, he usually ends up stuffing food in his mouth faster than I can stop him (not that I would stop him), but his cheeks end up stuffed like a chipmunk and he has no idea what to do with the food from there. I have to scoop it out as soon as he is good and ready. When he does pace himself (one bean, one string of cheese, one bite at a time), he can chew it and swallow it pretty well. He drinks like a champ (when he wants to) and always calls his drinks "wa-wa", no matter what it is.

We're going to keep working on mastering his oral skills this summer. His OT brought licorice the other day and we had him chew it 5x on one side and then switch. He has a great big bite and does a great job at chewing, he just doesn't have the chew, swish and swallow down yet. I'm hoping that if he can figure that out, then eventually, this boy is going to be a GREAT oral eater!

Here he is using his tongue to push all his food into his left cheek. This came after he bit the heads off of about 10 goldfish and threw their tails in his dumptruck. He kept pushing the goldfish into his cheek and 30 minutes later, I finally scooped out a pile of orange soggy crackery goo.

Owen's speech has taken off lately! Finally, he is initiating conversation a little more so that I don't always have to prompt him or ask him questions. I know he's a guy, but come on.

The other day we were grocery shopping and I blame Owen for going way over my budget. He was actually asking for food as we passed things... crackers, milk, juice, bacon, bananas.... he had to hold each item as I put it in the cart. I was so amazed that he was talking so well and having so much fun shopping that I gave him everything he wanted! Thankfully, all he knows is healthy food and so we're eating well this week.

The other day, Owen's developmental specialist came by for Early Intervention to talk about his therapies and progress. We made new goals and she brought up preschool for next year. My initial reaction was "no thanks." Kamryn never went to preschool and she turned out great! I can't imagine sending Owen to preschool. He doesn't walk, he's on oxygen, he has feeding tubes, he's my baby, I would miss him. No way. Call me crazy, but I think we'll wait until he's about 5.

Speaking of all the oxygen, tubes and cardiac stuff. I got a call from LPCH (Lucile Packard Children's at Stanford) this week and they tentatively scheduled his cath and visit for October 18-20th. I'm totally nervous for this one. Maybe I'm nervous to fly for the first time in 11 years, alone with Owen, and a portable oxygen concentrator that I've never used before. I'm afraid his oxygen saturations are going to plumet while we're in the air and I will panic.

Ok, I'm sure it will be fine. I'm just over-reacting. I do that.

Owen had a really rough week after vacation. He hasn't played much, no crawling upstairs, lots of "hold me" and "bup" (upstairs) and "beee" (binki). He's laid around in bed and watched too much Elmo. I ask him if he's tired and he shakes his head yes. I give him lots of choices of fun stuff to do and he says "no". We listened to music on the laptop and read books.

Today.. he is feeling more like himself. He's still not back to where he was a few weeks ago, but hopefully he's get there.

I'm still blending all his food and he loves it! I learned today that raspberries and Gtubes are a bad combination. Those little seeds are like rocks and clog the tube. So after a Gtube change, he was a happy camper and says he likes his new tube. The tube is our livesaver and I'm sure we'll have it for years to come.

Owen's oxygen saturations continue to be all over the place. I adjust his oxygen pretty often, but as long as he's not blue, we're cool.

I've been thinking alot about my conversation with Dr Rosenthal a couple weeks ago. He said that at some point we're going to have to look at Owen's quality of life. He has been "stable" for a year and a half now. Stable enough not to list him, but obviously requiring much support to sustain him. At what point do we say "enough is enough". We surely don't want Owen as a five year old on oxygen, feeding tubes and exhausted climbing a flight of stairs... that's just no way to live. I don't know when to make that call. That's why the cath will be a good indicator of things in October. It will be exactly two years from the date that we were first told that Owen would need a transplant. Since that day... he has remained stable, increased his medications by massive amounts, and worked on his development.

He still has a long way to go to catch up with other kiddos his age, and may not with his failing heart. All we can do is celebrate how far he's come and we know he'll be thriving one day!!

Pray for Gabriella's Sparkly New Heart

Our sweet friend Gabriella is getting hew new heart today!!! She has been on the list almost 100 days and today is the day. I am so excited for the Vega family. One year ago, they learned that their healthy little girl had a rare form of restrictive cardiomyopahy and miocardial bridging. In October of last year, just before she was to be listed for her new heart, she suffered a stroke that took away her speech and movement on the right side of her body. Gabriella is so amazing to fight like she has at only 5 years old. Please pray for her family today as they travel from Phoenix to Southern California so she can get her sparkly new heart. Please pray for the donor family that is saying goodbye to their precious little one today.

You can click on her picture to be redirected to her blog.

On a sidenote...

Please keep Mister Owen in your prayers. I will do an update on him later today. He has been exhausted since we got back from vacation. He can't climb the stairs, he doesn't want to stand, he asks to go "bup" (upstairs) and lay in bed the majority of the day. He loves to go on errands, but that doesn't require much from him since he just chills in his stroller. I'm trying not to stress it but if he doesn't pick it up a little, I'll run him into cardiology next week.

Summer

We have had an unusually mild spring in the desert. This is the first week of the year that we may actually see triple digits. It's no surprise that I LOVE the heat!! I look forward to our Arizona summers and all the fun that comes along with it.

Summer is...
Having Kamryn home from school,
spending our days in the pool
going to the movies, bowling or checking out new museums
lounging around the house in our comfy clothes, watching old movies
eating popscicles, watermelon and fresh berries
going to Sonic for happy hour
Bbq's (again, by the pool)

The list goes on and on.

There are only two weeks left of school! The temperatures are rising. It was time I give the blog a new summery look. Summer... bring it on!!

Lunch with Friends

Ever since I started blogging, we have become friends with some amazing heart families. No one can fully understand what it's like to live the day to day life with a heart babe. You can tell others about the medications, the tube feeds, the oxygen saturations and the fear of losing your child, but there is no way for them to fully understand it. It's been a huge blessing to find support from other heart moms!

With that said.. we LOVE to get the chance to actually meet our many heart friends in person. Brytten emailed me last week and said she would be in Arizona this week and so we planned to get together for lunch yesterday. Tegan and Owen have the same heart condition and are both doing good considering. We had a good chat and the boys waved at eachother, gave knuckle bumps and high fives.

Thanks for the visit Brytten, we had a great time meeting you and the Incredible T!

Golden Scholar

Kamryn's school has a special Academic Night to honor students that have maintained straight "A's" all year long. We are so proud of her!! She works hard at school, listens well and is a "perfect student'. She surrounds herself with great friends and is so sweet to everyone around her.

Her two best friends also made Golden Scholar... good job girls!!
Of course, Conner (cousin) made it too! He is such a smart kid, gets perfect grades in all his ALP (accelerated learning) classes and is also on Student Council. Speaking of which.. we will be calling him President Richardson from now on since he is President of their school next year. Yes, Connor is a year older than Kamryn and she is outgrowing him, even with his mohawk adding a few inches.
Owen had a great time during Kamryn's big night. After every name the Principal called, Owen would yell 'Noooooo' and then laugh. He is such a silly toddler.

As if we weren't proud enough by her 4th grade achievements, Kamryn just got her letter of acceptance into the ALP program for next year. She will join Connor in the Accelerated Learning program. She is excited to be pulled out of regular 5th grade class next year to go to ALP, for Math and Language, with her friends.

We couldn't be more proud of Kamryn and Owen is pretty proud of his big Sis!! We're excited that 4th grade is wrapping up in the next two weeks. We can't wait to have Kami home for the summer to swim, play board games and go to movies together!!!

I have been trying to catch up on posts everyday this week.. scroll down and see if there are any that you missed.

Mother's Day 2010

Mother's Day started off a little rough this year. Serious cramps and PMS took over and I was suddenly crying for no reason. I was over it by noon and we had a fabulous time from there on out. Kamryn made me a super cute card which I loved!!

My family came over for lunch and we had super yummy bbq chicken, quinoa and fruit salad. We haven't seen Livvy in a couple weeks and she grew a ton. She almost looks as big as Owen and hasn't even celebrated her first birthday yet.
This picture is classic!!! Livvy makes these crazy faces and Owen was cracking up!

I don't know how I missed the opportunity to get a picture of my mom and the kids. I did manage to get one of Nana with the kids. This is my Grandma with all 4 great-grandkids.

Owen was interested in everything Livvy was doing. She crawls with crazy speed, but Owen can beat her with his butt scooting skills. Then she was up on her feet faster than he could possibly attempt. She's going to be running circles around him soon, and hopefully he'll be motivated to catch up.

When she was eating her daddy's chicken, Owen came over to me and said "chi-chin". He ate about 5 small pieces of bbq chicken and I had to scoop them out of his cheek an hour later. We're working on that.

Grandpa brought the most delicious chocolate covered strawberries and red velvet cake for desert and we were in heaven. By WE, I mean Kamryn and myself. She has a sugar tooth, just like her momma.

Daddy bought me a bunch of pink tulips which I adore. I smile everytime I walk into the kitchen and they are in full bloom as of this morning.

We had a great Mother's Day and I hope all you mom's out there had a special day!

Bed Swap

The first thing we did when we got back from California was the much needed bed swap. Owen had outgrown his crib and Kamryn was outgrowing her twin bed. So we moved them both up!

We took down the crib. Moved Kamryn's twin bed into our room and pushed it between the wall and our bed. Owen is a happy boy in his new big boy bed! I am a happy mom because I finally got to use the bedding I purchased on clearance at Target last year... $14 for the entire set! :)
I love to watch these two interact... Kamryn pretends to be minding her own business and Owen goes in for the "attack".

This is Kamryn's new full sized bed! She has tons more room and her bedding that she already had just happens to be made for a full/queen bed. I look forward to the day that Owen can climb in bed with her when he's scared or just have a late night chat with his big sis.
Until the day that he is tube free, Owen will probably stay in our room. I am so nervous about all the tubes and I like that I can reach over to make sure his heart is beating anytime I want. Kamryn and Owen love their new beds and we are happy to be rid of the crib.

A Day at the Beach

May 5, 2010

We spent Cinco De Mayo at the beach this year. I love, love, love going to the beach!! We've never stayed this close to the water before, and it was fabulous!! This is our hotel on the beach. We will be coming back time and time again. For $99 a night, an ocean view room, and a skip over the boardwalk... we were in the sand.
While I was setting up our "beach spot", the girls dashed into the water...

Owen wasn't too thrilled about the freezing San Diego water, so we just chilled in the sand with Daddy.

He dug and sprinkled sand the entire six hours at the beach!!

The girls wrote their names in the sand.. and it lasted a whole two seconds before the tide washed them away.

It was a gorgeous day... a little overcast and we were the only ones around. Carson and the girls dug deep holes in the sand and Kamryn kept bringing the sand crabs over to Owen's bucket so he could sprinkle sand and watch them bury themselves in it.

I didn't get any pictures of them, but there were dolphins riding the waves with the surfers and jumping out of the water. It was pretty cool to see the dolphins so close to shore.

Here's a picture of Gigi digging and digging and digging... she did this for hours. I think I would be so sore I wouldn't be walking the next day.

Owen was covered in sand the whole of the day. Once in a while he would bring me a water bottle to wash off the sand... then he would dig right back in.

I love this picture of Kamryn....

After the high tide rolled in around 4:30, Owen got a mouthful of sand and then puked all over me, and our towels got soaking wet.. we decided to call it a day. We walked up to the hotel shower and the girls jumped in the pool (which also happens to overlook the ocean). My parents hung out with the girls by the pool while we took Owen up for a shower and a cat nap.

It was Cinco De Mayo and we headed into old town San Diego for some killer Mexican food!! I'm glad we showed up early because there were lines to even get your name on a waiting list for the restaurants. We had way too much to eat, and even Owen ate SO much mexican food! After some fried ice cream we headed back to the hotel to call it a night.

The next morning, we checked out and drove the 5 hours home. We'll be back to our hotel on the beach soon! What a great time!!!

Belmont Pier

May 4, 2010

We got up early on the 4th and drove 7.5 hours from Palo Alto to San Diego. My parents and Gigi were already at the hotel waiting for us. We checked in, moved to a big room with a view of the ocean and relaxed. Nothing is quite as relaxing as sitting on a hotel balcony watching the waves crash onto the shore.

That evening, we headed over to Belmont Pier for pizza and fun. Kamryn started out with a little "throw the ball at the clown and win a prize" and Owen convinced the girl to let him play too!
Then Gigi climbed up the palm tree to win herself a giant inflatable bat. Who doesn't want one of those?
Owen sure loved it and got plenty of chances to hold it while Gigi rode the bumper cars with Daddy, Sis, and Grandpa.
These four were crazy with the bumper cars... look at Gigi's face! Classic.

Then we moved onto Owen's favorites "bbbooooaaaa!" He loved the boats! He took his first spin with Kami and she taught him how to steer and ring the bell.

Here's a short video clip with the giggles of pure joy!


After the boats, I took the girls and Owen through the mirror maze. It was crazy! Everywhere you turn, you see yourself and then six of you. Owen was in heaven when he saw Gigi and Kamryn multiplying. It only took us forever to get out of there because I didn't realize the entrance was also the exit.

When we made our way out of the maze, we jumped on the carousel. I'm sure it wasn't as thrilling for the girls as it was for Owen's first time.

He loved it.. of course. Every time a ride ended he said "Moooooorrrr' and give us the sign, as if we didn't hear him. He's going to love Disneyland in October.

My mom and Kamryn waiting for the guys to buy more tickets. More tickets = more rides. The girls figured that out real fast.

While the girls went for another spin on the bumper cars, Owen took a few turns on the boats. This time, he was by himself, and I mean the only one on the entire ride. He laughed and smiled the entire time. Gigi ran around the boats and kept up with them the entire time.. Owen thought it was hilarious. I'm pretty sure he thinks Gigi is his second big sister... and she kinda is.

Later on, we found Daddy and the girls playing ski ball in the arcade. Owen went crazy when he saw the girls playing ski ball...."Ball, Ball"... so he took his turn.

Then we had a few match-ups on the air hockey table. We even taught Owen how to play.

Before we left, we took some pictures (with very bad lighting)...

After all the hours driving and a long night of fun... we were all exhausted!! We crashed at the hotel and woke up to a long day at the beach and Cinco de Mayo fun. More on that tomorrow.