A Day with Friends

We spent the majority of the morning at the Mullen's house today. I used to nanny for the Mullen's when Kamryn was little. She and I would go to their house a few days a week and I'd watch Jack and Sean. Kamryn and the boys were inseparable as we went on adventures to the library, mall, or just stayed home and lived in their pool. When the kids started school all day, I decided to go back to work full time. A few years later, Jean (also Kamryn's pediatrician) had Katie just a few months before I had Owen. Here they are now, 18 months later....
Katie is walking and talking up a storm! I'm pretty sure Owen was impressed. He saw Katie had a sippy cup and so he wanted one. He has only used the feeding therapy cups with the straw, so he didn't know what to do with a regular ol' sippy cup. We told Katie to show him.

Here he is imitating her!! She even got him to eat a little bit of hot dog, watermelon, cheese and pickles for lunch. I think we might need to borrow Katie for a few weeks to convince Owen to eat, walk and start talking.

After Owen's NG fell out (poor guy), he laid down on me and crashed in the pool. There's nothing like an afternoon nap in the water. The kids ate lunch and we were on our way home before nap time, but first I had to put his NG back in (hate that part). I miss the boys a ton and it's so great to see them! Kamryn loved hanging out with the boys and talking Pokemon, Nintendo DS and who knows what else.

Thanks for a GREAT day! Sorry I didn't get any pictures of the older kids, they were entirely too busy to be photographed.

Eighteen Months

I thought I'd do something a little different on Owen's 18 Months post. Look how much he's grown and changed over the last year and a half!! I can't say enough about this little guy, he brings SO much happiness into our lives. We are beyond blessed to have Owen in our family.

(if you click on my pictures, they get larger)

At 18 months, this little guy looks better than ever! It may have something to do with all of these medications. This is for his morning dose. Afternoon and evening is about the same.
Owen is 24.5 lbs and 32" tall. He's butt-scooting all around, until his endurance runs out. He is finally starting to bear weight in his legs!! He has figured out that rolling from his back to his tummy isn't so bad after all. He's still working out how to get from laying to sitting. Owen LOVES to babble and make noise, sometimes it makes sense and sometimes it doesn't, but we always seem to know what he wants. He has speech therapy jumping on board next week, along with physical therapy, occupational therapy and feeding therapy. I'm telling ya, this guy is mister popular round' here.



We love you buddy!! Happy 18th Birthday to you!

Fun Filled Weekend

We had ourselves a wonderful, fun filled weekend. Friday we had our monthly family party at Todd (Carson's dad) and Monica's. Karlee, Jon and Kate (nieces and nephew) were in town from St George and the cousins had a great time together. I never had any cousins close in age, or nearby, growing up. I love that my kiddos have 12 cousins that are all close by and around the same age. Kamryn even goes to school with 3 of them. I just drifted off subject. I do that.

Back to the party. The kids swam for hours. Owen played a little water football. And in the hot tub bubbles and waterfalls.

There was a water fight in the pool...
The girls jumped off the diving rock, over and over and over again.
There's always lots of delicious food, but I prefer eating it and not photographing it. We had a great time.. until next month. As I mentioned in my previous post.. Kamryn has had a relaxing summer break, but it's time to go back to school in just two short weeks. My baby is going to be in 4th grade and is growing up entirely too quickly. We took her school shopping and she now wears a size 7 shoe!! We measured her at the Doctor today and she is 56" tall. She hasn't even reached the "growing years" yet. Like I said, she's growing too fast.

Have I mentioned that she loves to date?? She goes on dates all the time and there is rarely a weekend that she is not off without her Mom and Dad. No, we do not allow her to date boys yet (or ever)! She loves to go on dates with her Grandparents. Usually, it's a movie and dinner, then some ice cream and perhaps she'll talk them into shopping. She loves date nights and looks forward to spending time with her many different sets of Grandparents.

Speaking of Grandparents... my Dad's birthday is today!! We had a big family dinner last night to celebrate. Happy Birthday Pops!We spent our Monday morning at Owen's GI appointment. Nothing new, just play around with his feeds and they are having the nutritionist make sure that his formula recipe is meeting his needs. If not, they will tweak it for me and send me the new recipe. Sounds thrilling eh? I did get the name of one of the pediatric general surgeons at Phoenix Children's so I can fill them in on Owen and that he will be getting a Gtube placed at Stanford. The communication will be open between General Surgeons here and there. That way, if something happens to his Gtube site while we're home, in Phoenix, Owen will be taken care of.

Also, Class lists were posted at Kamryn's school today. She got the same teacher that Connor (her cousin) had last year and she is thrilled! They took all five of her really close friends and split them all up into seperate classes, but as she says "there is always lunch and recess!"

The remainder of our Monday will be spent like this. Recuperating from our busy, FUN weekend.

Owen is feeling GREAT!! It's been one of those weekends that I forget there is anything wrong with him.

Cardiology

Owen had another night of insomnia between one and four a.m. That didn't stop him from waking up bright eyed and ready for our cardiology visit with Dr. Stock. Of course he was in a great mood, chatty and showing off his new found communication skills. He was more than cooperative when the nurse had to get blood pressures on all four limbs, get his weight checked and his liver felt up. All the while, I'm telling Dr. Stock about his bad days. The days that he cries, sweats, is lethargic and feels awful. Days like today are wonderful, but there are days that are just plain miserable.

We put our heads together and we think it is a combination of things that are causing his bad days. The medication increase is causing his tummy to hurt and his blood pressure to lower, which makes him feel so crummy. Thankfully, we only have one more increase on the Captopril and we start the Carvedilol tonight.

We have an appointment with GI on Monday to hopefully get to the bottom of his tummy issues. I know the meds don't make him feel well and he's still on a 100% formula diet (with the exception of the few bites of solids he eats throughout the day).

We'll go back to cardiology on August 18th for an echo and another increase of the Carvedilol. Then again on September 2nd to max out his Carvediolol dose. By the time we get to Stanford at the end of September, we'll have done our job of maxing Owen out on all his meds. Please pray that this is going to work. Wouldn't it be fantastic to put off transplant for a few years?? I know that's wishful thinking, but very possible indeed.

Now, if we could figure a way to wean him off the oxygen leash.

How do you like Owen's new roll-and-roar dinosaur? I found it on craigslist for $5 and Owen loves it! Our house is turning into a toy store, so I'm off to take pictures and sell some of the bright plastic toys that just don't get the love they deserve anymore. But first I need to dig under beds, in closets and through drawers to find the missing pieces to some of the toys.

This train won't be one of them. Although his stubby little legs still don't touch the ground, I can't get him off of this train.

You're probably wondering what happened to Ms. Kamryn as she has not been present for the past few posts. She's off enjoying her summer with play dates, cousins, swimming, and now we're getting ready to start 4th grade (in 2 weeks). There are plenty of posts coming soon with my baby girl, who is growing up way too fast.

Another Day

Owen had another rough morning. I increased his Captopril yesterday and he did great. Today was another story. He puked, he screamed, he sweated and got a little puffy. Low blood pressure perhaps? After a morning of cuddles, several baths (after the puking) and a drive to sonic, he crashed hard. He slept for a few hours this afternoon and woke up a little more content but totally dazed.
We took it easy and he tolerated his afternoon and evening doses of meds just fine. He did puke a few more times. I am thrilled that we are almost maxed out on his Captopril. He is supposed to be at 20cc/3xday which is a total of 3oz a day. We're at 18ccs right now. We have an appointment with cardiology on Friday and we'll start him on Carvedilol. I just hope his tummy can handle all the increased medications. And I sure do hope they are doing some good and not harm.

Kelli (my sister) brought Livy over so that I could take some pictures of her today. I love me a newborn, especially when she's my neice. I had to peel her out of Kamryn's arms so that I could actually take some pictures. Owen gets close, but not too close. He did throw a toy car at her... I guess he wanted her to throw it back. He keeps his distance, watches her every move and refuses to love on her. Whew, good thing God knows what he's doing by keeping my infertility in check.

Does anyone else stay up late at night because it's the only time you have to yourself?? Just curious.

Keeping it Cool

We have been staying indoors, in the air conditioned house. I have no desire to check my mail as I know my electric bill will show up any day now. I'm sure it'll be insanely expensive as we keep our house about as cold as an ice box so that Owen doesn't sweat buckets. The best part of summer has finally found it's way here. Monsoons.

Monsoon season is the time of summer I always look forward to. The storm brews, dust blows, thunder roars and the rain comes down! The skies are lit up with lightening. The kids squeal with excitement. Last night was our first, perfect storm. We went out on the front porch to watch the storm and Owen laughed with each burst of thunder. I tried to get some pictures but my lens was soaked from the rain. If the meteorologists are right, I'll have another chance for pictures tonight.

On another note, we have discovered that Owen has been holding out on us. For a few months now, and even up to last week when he had his speech evaluation, we assumed he didn't understand us when we talked to him. We'd ask him questions or try to communicate with him and get a response that sounded like "eeeehhhh?" or "oooohhhhaaaakkkssshhh". He will imitate but not initiate. If we ask where a body part is, no response. Well...

Sunday, he was fresh out of the tub and laying in our bed when I asked "Owen, where is your diaper??" To which he picked up his diaper. Then I asked "where is your nose?" You get the idea. He knew all of his body parts. I threw a trick question at him... "where is your tape?".. to which he pointed to his cheek. Ah-ha. Since his little revelation of knowledge, he has been showing off. He is initiating a little more as well.

Mr Owen has also been standing up on his legs a little more. He needs about 80% support to get up to standing but I can hold onto his hands and he'll stand for a minute or two. He turns blue and is clearly winded afterwards, but what great progress! He's also trying to get in and out of the sitting position. He lays on his back, rolls to his tummy and stops for a breath. Then he pushes his torso up and tries really hard to push into sitting. He has done it several times, but once again is winded. I'll get a video of him doing it one of these days so I can record the JOY on his face when he realizes he's accomplished it! It's priceless.

We're off to rent more movies to watch while we sit in our icebox of a home and watch the monsoons tonight.

Snickerdoodles & Such

We have been up to a whole lotta nothing. It's too hot to go outside, and by hot I mean it's 118, but who's counting after 110? We try not to venture out too often in the heat of the day which leaves us with a lot of creative indoor activities.

Kamryn has had several playdates this week. I spent hours on the phone with our insurance company trying to argue the point that Owen needs Viagra and it's not for recreational use. They also don't want to pay for his feeding pumps, oxygen or supplies anymore. I was told he doesn't qualify for medicaid because he's too ill and considered an acute care patient. It's me vs the system and I say bring it on!

During these many wasted hours on speakerphone, Owen has learned to get into mischeif. He discovered that his teeth are not only for eating, but biting. He'll cuddle up to me, give me a hug and then lay into me with his chompers! He's also very vocal lately and there is no question that he wants attention and now, please. Our baby is becoming a toddler.

Back to the topic of so much time indoors and not a whole lot to do. We were bit by the baking bug again today. I love to bake. I just have to be smart and bake things that I don't like. If chocolate is not a main ingredient, I won't eat it. So, to save me an extra hour of working out (let's pretend that I do in fact workout), we made snickerdoodles today. This was the first time I gave Owen the beater. He had no idea what to do with it at first, but he's catches on quickly.
He scooted over to Kamryn and pinched her on the back of the legs for attention. That's another habit he's picked up over the last few weeks. Pinching, or the pinch-scratch, he knows how to get a reaction from you.

Sis is a sucker and stuck him up on the counter to help her roll the dough in cinnamon sugar. This was not at all messy and I am not still stepping in sugar granules after mopping my kitchen floor.

Snickerdoodles are one of Kamryn's favorites. I'm pretty sure it said it would make 48 cookies, but after eating sugar dough, we only got 30 cookies out of the batch. I can never make the amount the recipe calls for.

Warm snickerdoodles, fresh from the oven. Crispy on the outside, soft and chewy in the middle. Owen even ate a few bites.

Snickerdoodle Recipe

1/2 cup butter, softened

1/2 cup shortening

1 1/2 cup white sugar

2 eggs

2 tsp vanilla extract

2 3/4 cup all purpose flour

2 tsp cream of tarter

1 tsp baking soda
1/4 tsp salt

2 tbsp white sugar

2 tsp ground cinnamon

Preheat oven to 400 degrees. Cream together butter, shortening, and sugar. Add eggs and vanilla. Blend flour, soda, salt, and cream of tarter. Add dry ingredients to wet ones. Shape dough into rounded balls. Mix the white sugar and cinnamon together and roll dough in mixture. Place on cookie sheet and bake for 8-10 minutes. Don't eat too many, this may come as a surprise, but they are not the slightest bit good for you!

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Here is the face Owen makes when you take the laptop away from him. The only thing he ever wants to play with is the laptop. I'm pretty sure I had the best idea this week when I actually considered selling all his toys and buying him a laptop. He'd actually want to play with it and think of all the space it would free up in my family room. Just an idea.

On a totally random note... I have been taking the free photoshop class through jessicasprague.com and I am in love. I have PSE7 and I know how to do basic photo editing and some graphic design. I have never really understood how to do muliple layers, texturing and borders on my photos. This I learned today. I obviously have lots of playing around to do, but it will have to wait until Mr Mischeif goes to bed.
I am happy that Owen feels good enough to get into trouble. I am happy (sometimes not so happy)that he is biting, pinching, and yelling because it means he is feeling well and that he knows what he wants. I am happy that Kamryn has three more weeks of summer break before she has to go back to school. I am thrilled that Carson just got home from work so that I can go get a pedicure and some much needed me time.

He's Back!!

Owen woke up a new babe!! He still had his 2am insomnia (no idea what that's all about), but he's back!!! He is happy, butt-scooting around, eating, playful and we are thrilled! He must've heard me talking about calling Dr Stock today, and he perked right up.

Thank you for all the advice on constipation relief (that sounds gross). I actually put a few ounces of prune juice in with his night feed so it dripped slowly while he slept. I don't know why I didn't think of this before?! Usually I give him prune juice in a bolus feed and maybe it was irritating his tummy more, where the night drip is continuous and feeds him over several hours. Whatever... it worked.

Owen had his speech evaluation today and, of course, was Mr. Social at his best. It's always hard to hear those developmental questions.. "does he turn around and look for you when you say where's mommy?" Nope. "Does he initiate play, like bringing books over to you to read to him?" Nope. Nope. No again. I know he'll catch up, but it breaks my heart to know that he has to work so hard to do simple things, like talking, eating, playing. I hope that with a new, whole heart, he'll finally start to thrive.

I didn't take any pictures today because we were busy playing with our happy guy for the first time this week. Here's a picture I took last year on July 15th.
Hopefully we have a few more weeks of Happy Owen before he hits another down period. He definetly has been on a two weeks UP, then one week DOWN. I have two more weeks of increased Captopril to max him out and then we'll introduce his Carvedilol. Then, work on getting that to a maximum dose. I am anxious to see his echo on Aug 18th to find out if all this treatment is having a positive impact on his heart failure. Praying it's not making it worse.

Mr. Moody McMoody

I want to say that Owen is feeling better today, and perhaps he is. He traded in his very sad cranky self for a much more moody self. He has gone from happy this morning, to miserable this afternoon, and is a little more playful this evening. My usual sleep-thru-the-night son, has been waking up for hours during the night. He simply wants to cuddle and babble. I oblige. I can't help but wonder... why the sudden change in his sleep habits?

There has been no puking, except for first thing this morning. There is major constipation despite my efforts of prune juice and/or Miralax. He is in so much pain every time he has a BM that he screams and becomes soaking wet with sweat. Any ideas??

Other than that, he prefers to not exert his energy butt-scooting around. He sits in one spot to play and that only lasts about 30 min before he is exhausted and wants held. He has spent the day cuddled up to my chest. Kamryn enticed him with her DS to stand up against the couch for 5 seconds... just long enough to take a picture.

Allow me to introduce to you the many faces of Mr. Moody.....

This was the cranky, "you can't make me smile" face.

This is the crusty, "just put the camera down and hold me face"
This is the "I'm annoyed that you are trying to make me play, because I don't want to" face

Wait... Hold it... I think we might actually have it...

A SMILE?!?!

That smile only lasted about a second because sis came in the room being silly and wild. Owen cracked up, then reverted back to face 3, annoyed. At least the smile came out.

As I'm writing this, Owen is throwing balls down the hallway. Maybe this is a sign that Moody McMoody is on his way out of here. If only we could stop the constipation, puking, sweating, exhaustion.... Owen could feel like a real boy. I don't blame him at all. I can't imagine how icky all his meds make him feel, the constant frustration of feeling exhausted, tape stuck to his face with oxygen blowing up his nose, tubes going down his throat. I think I'd be a little more than Moody myself.

Cause you had a BAD day...

Owen's day looked like this.

I don't know if it's the increased Captopril (heart meds), but this little guy is just plain miserable. He pukes, cries, sweats, and it's not easy to make him happy. He is constantly needing snuggled and held. He cooperated with Physical Therapy for about 15 minutes before he was exhausted. He has no symptoms of being sick. By sick I mean a normal 17 month old sickness. I'm going to back down on his Captopril until tomorrow and see if he feels better. If not, I'll make the dreaded call to cardiology.

On a HAPPY note... Owen did a little walking while leaning against his walker and having Jessica (his PT) support him. He's learning to bear weight in his legs and we are so proud of him. It takes a lot of energy from him to stand up like that for just 15 seconds. He breaths as if he completed a marathon, turns blue and has to lay down for a few minutes to regain his energy afterwards. He continues to try and he always claps for himself when he's done. Days like today, he breaks down and cries afterwards. He's just plain worn out.

Tomorrow will be a better day. Until then. We rest.

Simply Satisfying Saturday

We are having a simple Saturday, lounging around the house in our jammies. Owen loves to cuddle up to Sis and watch her play.

It is too hot to go outside.

We made cookies, watched movies, and most importantly... stayed cool. It has been a Simply Satisfying Saturday!

Pulmonology Appointment

Today we met with the pulmonologist. While Owen was being weighed, measured and his vitals were checked, I unplugged his oxygen so it was easier to maneuver around the small area. Five minutes later, when it was time to check his oxygen saturations, he was already in the low 60's. A few minutes on 3/4 liter, he was back up to 80. Yikes. Guess I won't be attempting to wean him off oxygen anytime soon.

The Doc came in with a giant stack of Owen's medical docs. He was a quiet man and asked questions about Owen's breathing and history with the ventilator. He took a break to go look over all of Owen's past chest xrays, blood gases and cath pressures. When he came back into the room he listened to Owen, looked in his ears (not sure what ears and lungs have in common) and felt his liver.

He left the room again to review a few more things... by this point I was getting a little anxious. Thankfully, Owen was more than cooperative. He really loves to go to the Doctors appointments. It's a little odd, but makes life easier.

Finally, after what seemed like forever, the Doctor came back in. He said he reviewed everything and the only thing wrong with Owen's lungs is his failing heart. Otherwise, the lungs are perfectly healthy!! Horray for that. Then he had to comment on the size of Owen's heart on xray. Yes, that one right ventricle takes up more than 3/4 of his chest. It's the perfect picture of heart failure. I'm going to order films from his last chest xray, it's unbelievable.

One last thing... I spoke with our NP at Stanford and she is going to discuss the possibility of the Gtube placement with Dr. Rosenthal on Monday. If he gives the thumbs up, then we'll schedule surgery for September while we're out there. That's it for now. Night.

A Fun Kinda Day

Kamryn has been begging to go to As You Wish and "paint something", like we did here. My mom and I took the girls to buy their new school bags first. Of course Kamryn picked out the hot pink/zebra messenger bag studded with rhinestones. Girly, but functional.

After the girls picked out their pottery, selected their paint colors and started painting.. Owen was passed out.
Gigi painted a purple hippo, piggy bank with blue polka dots and big red smackers.

Kamryn painted an elephant night light, mint green, with puff paint swirls all over it.

Here is her finished elephant.... before it's fired and glazed.

We walked across the shopping center to Fat Burger, Kamryn's favorite. The girls ordered their usual... baby fat, meat and bun. Owen ate 2 french fries, a slice of pickle and 2 straws.

We bribed the girls with Coldstone if they ate their lunch, didn't antagonize each other, and helped pick up everything Owen threw on the floor in Fatburger.

At Coldstone...Owen ate the majority of my Gharadelli chocolate ice cream with brownie mix-in while I went outside to start the car and cool it off.

It's nice to be in our air conditioned home again. Tomorrow we have to venture out to the Pulmonologist. I have no idea what tests they are planning to do on Owen, but I'm praying that his lungs are nothing short of perfect!

Monday!

I love Mondays. It's a fresh start to another week. The weekends are always relaxing, but Monday is the day that I feel like being productive. I start all my diets on Mondays. I start my weekly menu on Monday. I never schedule appointments or errands on Monday. It's a day to get stuff done around the house and recover from the weekend fun.

We held off on the bbq, pool party tradition this 4th of July. Then the weather was so nice at around six last night, that we had an improptu bbq and swimming fun. Kamryn loves to smother baby Livy...
Here's my handsome Dad.

Here's my beautiful Mom with all her grandkids.... Kamryn, Owen, Gigi, Livy.

And my favorite two kids in the world....

We had a great weekend!! Now it's another wonderful Monday. I should get back to scrubbing the floors, doing the laundry and tonight is the Bachelorette. (Hello. My name is Andrea. I am addicted to reality TV.)

4th of July

It was a scorching hot day in the desert... it was teetering on miserable at 110 degrees. No festivities, BBQs, pool parties, or parades for us this year. Although, we did make it out to the fireworks! We parked in an empty lot (with all the other works watchers), cranked up the air conditioner, and watched the fireworks light up the sky. Word to self.. next year we are going somewhere cooler.

Since we were home bound, I realized I wouldn't have the opportunity to take pictures of the kids in their red, white and blue. I tried... I really did try. Mr. Owen was NOT having it!
I let him scoot around outside while I snapped some of Kamryn, then he got jealous.

He tried to close the front door so that I couldn't come in... this is his new found game. He thinks it is hilarious to close the door, hold it shut with his feet and not let you in the room. We've had two finger smashing incidents today alone.

Any chance Mr. Owen will get my curls??

Hope you had a great Fourth of July!!! It's 10:45pm and the meteorologist on the news just said it's 98 degrees out. Only a few more months of summer.