Summer in the Desert

You know it's hot outside when...

-The temp in your car reads 110 degrees

-This is why you burn your hands on the steering wheel

-You feel your flesh burning when you're outdoors -- burning flesh is not the equivilent of a tan.

-Your electric bill exceeds $200 because you spend all your time indoors staying cool

-You can fry an egg on the sidewalk (kids, don't try this at home)

-Your kids constantly ask for popsicles, watermelon and lemonade

-You give the kids an afternoon bath instead of going swimming... lets face it... the water is cooler in the tub...

These are just a few reasons we love our Arizona summers. There are "chances" of Monsoons in our forecast... please, BRING THE RAIN!!!

Super Silly Snapshots

Sometimes, super silly snapshots speak for themselves.

SURPRISE!!

Kamryn's Idea of Babysitting

Kamryn loves to watch Owen while I get ready in the morning. She keeps a good eye on him and shares every single detail of what he is doing, at that very moment. "Mooooommmmm, Owen made the silliest face and then he said "ooooooohhhhhaaaaahhh", isn't that funny?" Which is followed up with another play-by-play moments later. At least I don't wonder what he's up to.

This morning, I hopped out of the shower to find these two playing keyboard on my bed. Owen was singing, dancing and observing his sister's every move. To which he would attempt to imitate her. This is Mr. Owen dancing to a rockin' version of "The Muffin Man."
As you can see he is feeling a little better. He only puked once today (so far) and he seems to have a bit more energy.

I had to share this picture from last week. Kamryn was watching Owen while I cooked dinner, did the laundry, cleaned toilets.. you get the point. I came in the room to find a very confused Owen and a snickering Kami. Owen loves to butt-scoot from the family room carpet, into the dining room, down the hall and around the kitchen. Our house is mainly tile which is easier to scoot on. My guess is that Kamryn was tired of chasing him around the house so she built a toy trap to keep him in one room. She underestimated the intelligence of Mr. Owen. He quickly figured out all he had to do was move the toys with his feet and he was on the move. I'm sure she'll think of a better contraption next time.

On a totally different subject... I went to WalMart to return a few things and decided to grab something for dinner while we were there. That was until I was searching through the beef and discovered the section of Cow Parts. They have quite the variety of cow tongue, liver, intestines and fat. We came home empty handed, my appetite was lost.

Feeling Down

It has been H-O-T outside! Yesterday was at least 107, but felt much hotter. Since we'd like to keep our flesh from melting from our bodies, we stay indoors. Owen hasn't been feeling the best either. Not sick. Just exhausted, sad, puky and just not himself.

He's still butt-scooting all over, but he exhausts easier than last week. We're hoping it's just another "down" and he'll get over it soon. He has good weeks and bad ones. He usually pulls out of it. We know that at some point he won't be able to pull out of it and will continue to go downhill... that's when we know it's time for transplant. I'm pretty sure this is not the time.

Let's just pray that this is a bad week and he'll pull himself out of it. I've been slowly increasing his Captopril and I've gone from 16mg/day to 30mg/day. He is supposed to be on 60mg/day. Maybe all the extra meds is the problem and it's too harsh on his little tummy.
Owen has been puking several times a day. I took this picture after I cleaned it up and was getting the tub started, for the second time today. It breaks my heart to see him so sad.

After the tubby, he CRASHES from exhaustion.

No matter how he's feeling, you can ALWAYS get a smile out of him. We go to cardiology on Wednesday, so I'm hoping he feels better before then. Meanwhile, we will stay inside and relax.

Reflux, Tubes, and Therapies, Oh My!

Mr. Owen continues to butt-scoot all around the house. He is exploring every square inch of our home. Opening doors, shutting doors. Taking things out, putting them back. The faster he moves, the more grateful I am for his oxygen cord to guide me to him. He is more vocal now as if he's telling us about his new-found freedom. He hasn't gotten into mischief, yet. His favorite new game... throw the ball down the hall, retrieve it and bring it back. Like this.

The downside to his new active lifestyle... he's been puking. I don't know if it's all the movement or demands he is putting on his body. It could be the increased medications. Please don't let it be declining heart function. He's been refluxing 4-5 times a day, it's not just a small spit up either. It's forceful and he's exhausted afterwards.

I changed his NG yesterday and it was the first time in 16 months that I have said, I never want to do that again. I'm pretty sure the tube was not the issue this time because even with a new tube, he is still puky. I also ruled out that he's feeling sick because, like I said earlier, this boy is ACTIVE.

Back to the topic of the NG tube. The reality of the situation is, Owen doesn't eat much. He is 100% tube fed and with a failing heart, it's not going to improve anytime soon. Every time I change his tube, my heart aches, but yesterday was different. He was mad at me. He knew it was me that was (for lack of a better word) torturing him. I think we're going to make the move to the G-Tube soon. Or, as I like to call it, the tummy button.

I got a call from Stanford this morning and they scheduled Owen for a visit on September 24th with cardiology. Unless, of course, something happens that he should be seen sooner. I mentioned to her my concerns about the tube and she is scheduling an appointment with the general surgeon while we are there. We, along with Owen's medical teams, feel it would be a good idea for Owen to have surgery done at Stanford and not Phoenix Children's. If something were to happen while under anesthesia and Owen ended up needing life-support, we want him to be at his transplant hospital.

We have an Appointment with Dr. Stock on the 1st and we will discuss the reflux, the ever-increasing medication and maybe even an Echo to check his heart function.
Owen was once again denied for the state's early intervention and development disability programs. They say that he is only delayed due to his heart condition, which doesn't count. So even though he IS in fact delayed in his development (50% in motor, 30% in cognitive/language) he won't be getting therapies or services. I am off to call the director of the services and argue my point once again. ** Just got off the phone with the director and she said "Sorry, but you should be GLAD your child is not Mentally Retarded and it is his heart condition causing the delays, you really shouldn't waste your energy on this." Then I hung up and cried. I'll call her director tomorrow. I love that I am my child's advocate, even if I am starting to sprout grey hairs because of it.

Speaking of which... tomorrow I will say goodbye to my 20's and welcome my 30th year!!

Happy Father's Day

Thank you for being the most amazing father to our children. You are playful, loving, caring and your face lights up when they are in the room.... thanks for being a great Dad!

This great man also bought me these beautiful roses for our 10 year Anniversary! I couldn't help but take a picture of them with my new (inexpensive, I might add) camera lens.

This is a self portrait. You know, the kind where you stretch your arms WAY in front of you and take a picture in hopes that you get at least one body part in the frame.
I was bored and had no other subjects to take photos of because Kamryn was busy talking on the phone with friends and Mr. Owen was sound asleep.

My weekend started with my car door refusing to open (from the inside or out). Since it was my driver door, I had to jump over the passenger seat to get in and out of my car. I took it in for repair this morning and $500 later, I can now open my door. At least it was FREE to jump over the seat.

We went out for some greasy Mexican food tonight. Healthy it is not, but very delicious, and sometimes it's all that matters. My kids LOVE refried beans and would live off of them if they could.
Then we stopped at Bahama Bucks for desert. Bahama Bucks is a sno-cone lovers dream! You can get any shaved ice, pretty much any flavor, with whipped cream and an umbrella to boot.
That wraps up the weekend. Tomorrow we celebrate our Father's! Happy Father's Day to all the men in our lives... we appreciate ALL that you do!! :)

Happy 10 Year Anniversary to Us!!!

It all started in October 1998. I was a year out of high school, just moved back to Arizona (from Utah) with my family, and I was starting my second year of college. Carson had just returned from serving a 2 year mission in Philadelphia, was working at Rio and going to school full time.

We met at a Single Adult activity for our church. After several hours of playing 007 through a neighborhood (don't ask), I had blisters all over my feet from my cute sandals.. then Carson made his move... "Hey, do you want to go hiking tomorrow?" As I looked down at my feet, all blistered and sore, I said "um.... I don't hike."

We ended up going for Ice Cream that night and talked until the wee hours of morning. We spent every moment together from then on. We dated exclusively from October through May. We were engaged to be married and I had a bun in the over (otherwise known as Kamryn).
Five weeks later, we got married. We married in our church and were surrounded by friends and family. We danced, I smashed cake in his face, we were young and in LOVE. We honeymooned in Vegas and had a second reception in Salt Lake a week later. It's been a wild 10 years! Carson finished college, I'm all reved up for Nursing school. We've owned 2 homes. We have 2 adorable kiddos. We've traveled back and forth to Disneyland (glamorous, we know). We've GROWN up together, which has it's ups and downs. Through it all, we've remained best friends. I LOVE YOU BABE!!!! Happy Anniversary!!

Butt-Scoot -- Caught on Video

I finally caught Owen butt-scooting around on video! He may be out of breath, he may stop to take breaks, but after 16 months he's finally moving!

Owen hit another HUGE milestone today... he can roll over from his back to his stomach and push himself up to a SIT! He only did it twice and was completely winded afterwards, but HE DID IT!!!

We Have A Problem

Owen is ON THE MOVE!!! He has officially learned to scoot his way all over the house, on his bottom. No hands necessary. We are thrilled that he discovered this new talent, and talent it is.

There is just one problem.....

Owen is on a leash with his feeding pump on his IV pole and his oxygen tubing. Sure, the first day of his discovered independence was great. I followed him around all day encouraging him to go a little further. I pushed his IV pole around behind him and helped untangle his legs from the oxygen tubing. That was day one. Now, I will be in the kitchen cooking when I hear "aaaahhhhhh mmmmmaaaaammmmm" and I come running to find Owen holding his tape on his face so his tubes don't come out. Poor guy!

He is on hourly feeds so the formula drips over an hour -- FIVE times a day. The rest of the time it's just a matter of avoiding strangulation on the oxygen tubing. Yikes. Anyone have any advice?? I'm pretty sure Owen would appreciate it too.

Other than that little obstacle.. he loves his new freedom to move. He was under the table, in the curtains, through the kitchen, down the hall and into the den. Oh and his diaper was not filthy dirty on the bottom from scooting on my sparkling clean tile floors, because that would be just gross :).

I want to believe that the increased medications are really helping him feel better. I don't expect his heart to come out of failure. I am just happy that he is finally starting to have energy, sleep less, eat a little better, and has the strength to move around. WAY TO GO OWEN!!!

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On a completely different note.. please say a Prayer for our dear heart friend Lindsay. She recieved her new heart over a week ago and amazed us with how quickly she was recovering! She has taken a turn and is on life support. Go HERE to read her story.

"Horray for Owen!!"

I was in the kitchen cooking dinner last night and left the girls (Kamryn, Rylee and Tatum) to play with Owen in the family room. I heard cheering, giggling and here is what I saw.....

It's evident that Owen just doesn't get any attention around here!

Cardiology Visit

Today we had a visit with Dr. Stock, our favorite cardiologist ever. Owen was fully cooperative as usual. He held his arm out straight and held still for his blood pressure, which was 80/66. Then he laid down on the table and sat as still as a statue while the nurse did his EKG.. pefect reading!. For the first time ever, he sat on the scale and didn't make a peep (he usually hates the idea of being buck-naked on a scale, I don't blame him). He weighed in at 23.5lbs and 30.5 inches.

Dr. Stock had a chance to review all the information from our cardiologist, Dr. Rosenthal, at Stanford (transplant hospital). He too is a bit overwhelmed with the idea of giving Owen 20cc's of Captopril, three times a day. Dr. Stock is cautiously optimistic, along side myself, that we will get Owen to his maximum dose of medications saftely. We both trust that Dr. Rosenthal is the expert in heart failure and that is exactly what Owen needs right now. We all know that the need for Owen to get a new heart is just around the corner. We are all praying to get at least another year out of the heart he has. Only time will tell what Owen's plan is.... meanwhile.... we celebrate in how well he's doing today!!

His sats were at 83 today on 3/4 liter of oxygen. When I try to wean him off he drops down into the 60's.

So we will keep these lovely green tanks as a permanent fixture indefinetly. They add a charm to our dining room and a little color against our white walls.

This feeding pump isn't going anywhere as it is the only way Mr. Owen is even close to 23.5 lbs. Someday he'll eat... someday.

This is the medicine counter in our kitchen. We have an endless supply of syringes and six compounded medicines. Not pictured... our 3 pill cutters and crushers for his daily dose of asprin... I can't figure out why they don't make that in a liquid form?
It may seem like a lot of "stuff" for our home, but without it Owen wouldn't be alive. We are grateful to have all of this equipment and can't imagine a life without it. Actually, I could imagine my life without the 50 ft oxygen cord that tangles itself up on everything in it's path. We'll leave that for another post.

Summer Days

The lazy days of summer continue....

Carson went back to work this week and the oral antibiotics seem to be doing their job. We're back into our routine of cooking, cleaning, shopping, swimming and chillin' indoors during the HEAT of the day.

Monday started off with a trip to the pharmacy to pick up Owen's prescriptions. As I pulled up to the window I realized my purse was not in the car where I left it. Kamryn said "sorry Mom, I took it inside so that you didn't leave it in the car." My fault, I should've checked before driving 20 min to the pharmacy, we drove home and back again. No biggie.

Kamryn has the craft bug. She loves to do crafts.. anykind of craft... sewing, cake decorating, painting, drawing, gluing buttons onto canvas, you name it. Needless to say, she doesn't get it from me. I found a couple great ideas online that were crafty, time consuming and simple enough for her to do independently. I wrote down all the supplies needed and headed off to Hobby Lobby with kids in tow. About 2 hours later.. we couldn't find 3/4 of what was on the list... either it was out of stock, or they don't carry it. I couldn't leave the craft store, 2 hours wasted, with no craft!! I told Kamryn she could have anything she wanted, any craft. She picked out these letters, with the wood cutouts and we already have a bazillion acryllic paints at home. She was thrilled and it only took her 5 minutes to come up with the idea. Why didn't I think of that?
We came home, Gigi came over. The girls painted. Owen helped.. yikes. I gave him some paint brushes and water to play with and he was satisfied.

Here are their finished products. They did them by themselves. Not bad for a $1.00 craft!

Summer wouldn't be the same without popscicles after lunch. Oh, and the giggles from the jokes off the popscicle sticks... hilarious!

Owen eats his popscicles in his own way! Hey, at least he's eating!! :)

The kids bathed and we all settled in for a little Bachelorette. Ok, I settled in for a little reality show drama. Carson worked on the laptop, Kamryn snuggled into bed with me and asked 50 questions as to why all the guys say "Someone is NOT here for the right reasons." Owen crashed at seven as usual. Gotta love our summer days!

Today was just like any other. Up at six, breakfast, cleaning, laundry... then Kamryn's friend Elizabeth came over. Owen thinks that everyone that comes over is there to play with him. Kamryn and her friends run around him while he giggles until he turns blue in the face, literally.

I caught him scooting across the floor on his bum today. He used to butt-scoot in a circle, then it was backwards and now he's mastered the forward scoot. He was eyeing his turtle from across the room. We watched him scoot to it, then instead of picking it up with his hands...
It's so humorous to listen to the girls talk "big girl talk". No boys entered the conversation, they talk openly in front of Mom, and they even pulled out the Barbies. There is hope that my little girl is going to be little for a little longer!

The rest of the week is going to be just as "normal" as these last two days have been. Did I mention I love Summer?? Tomorrow, we'll see cardiology for our 3 week checkup. We've increased Owen's meds by almost double and we still have a ways to go. He's been having great days... sleeping less, playing more, eating a few bites here and there, and I just hope that his heart function is holding steady.

We won't have an echo tomorrow so I don't know for sure what the plan is. I think Dr. Stock just wants to continue seeing him every three weeks to keep a close eye on him. He's still very sick, but I like to forget about all that. He seems just like any other babe.. look at that smile!!

Discharged

Carson was released from the hospital today! After some convincing the doctors that 2 oral antibiotics should be enough, we were outta there. Owen will miss the window in daddy's room. Check out whose using his legs! We're still working on building up those muscles so he can support himself.
When he was tired of the window, Mr. Owen spent time with Daddy in his hospital bed.

I got the call last night that Kelli was ready to push, so I ran downstairs and made it in time to watch the delivery. It's always amazing to watch a baby be born. If it were HIS will for me, I'd have a bunch of my own. Here is me showing Livy to the Kami, Gigi and Owen.

Owen was mesmerized until I took Livy back to Kel. Whoa.. he wasn't so happy anymore. Note to self... Owen is not interested in having a baby brother or sister anytime soon!

Kamryn was dying to hold Livy, so we made our way up to their room first thing this morning. Kami picked her right up and wouldn't give her up. I think Kamryn and Owen have opposing views on the prospect of a baby #3. Owen didn't care if sissy held Liv, but I wasn't allowed to go near her.

We made our way back up to Daddy's room in time to pack up and head out. Owen will miss that window with a view. The rest of us are happy Daddy is on the mend. It's good to all be under one roof again.

No more "Lazy Days of Summer" posts from me. The minute I write about how relaxed and boring our summer is turning out to be ... well, you know the rest.

Carson Update and Welcome Olivia

Quick Update because I am tired. We spent the entire day at the hospital and it drains the energy right out of me.

Carson is doing good. His back is hurting him something aweful, all his nurse gave him was a heating pad.. gee thanks. He continues to get IV antibiotics and they are doing their job. His infection was the size of a silver dollar and went 3" deep into his abdomen.. yuck. So when I said "suck it up honey, it's just a sore"... I'm sorry!! We're thinking about discharge tomorrow... I miss my husband... please let him come home!

On another note... Olivia (middle name to be determined) made her debut this evening at 7:30 (ish). She was 7lbs 2 oz and 20" and popped out 3 weeks early and within two pushes.. good girl! I have a bazillion pictures that I will post tomorrow. She is HEALTHY and adorable! Welcome to the family Livy. Owen was very interested in sweet Livy until I got my little paws on her. YIKES... no siblings for him yet... this may be the only time that I can be thankful for infertility. :)
It's off to bed. Thank you for your thoughts and prayers. I'll be glad when my hubby is back in bed with me. Miss you!!

In the Hospital... *Updated*

**UPDATE***

Carson is being admitted to the floor for at least 24 hours while they give him IV antibiotics. They did a catscan of his abdomen and he puked... that's all I got out of him. I'll be heading over to take him dinner and say goodnight soon. Hopefully he'll be home tomorrow night. If not...

Kelli was admitted to labor and delivery and they are inducing her. The baby is being closely monitored and all looks okay. I'm expecting a new niece sometime tomorrow. I'll go from Carson to Kelli tomorrow and hopefully make it to the delivery.

I'm ready to say goodnight to our crazy day and I think I might even let Owen and Kamryn sleep in bed with me tonight! Sorry Honey, we really will miss you.

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What a day it's been thus far! Carson has had a serious staph infection on his lower abdomen all week long and the antibiotics aren't working. This morning he went to urgent care as our less-than-adequate should have done something about this on Monday family doctor is out of town. They took one look at the open wound the size of a silver dollar and said "go straight to the hospital". I dropped him off at the ER about an hour ago and they already started him on IV antibiotics, drew blood and cultures and will mostly likely admit him. I was on my way home to bleach and disinfect the house for the hundreth time today (it's extremely contagious) when I got a call from my sister.

"The baby isn't moving! I'm at the OBGYN across from the hospital. Can you come pick up Gigi?" The timing couldn't be better because she was across from the very hospital that I just dropped off Carson at. I ran up to grab my neice Giselle, whose 6. This is Kelli's 3rd pregnancy. The first was Gigi Monster, and to make a long story short, she is now happily adopted to my parents. Kelli's second pregnancy was to the adorable Mr. Luke, 2 years ago and she selflessly gave him up for adoption. Her life has come together, she's married and this is her 3rd baby, a little girl. She's one of the lucky ones that has her babies weeks early and they are big and healthy. She just called and they are admitting her to the hospital.. the same hospital that my dear hubby is at right now. What a day?!
I came home with all three kiddos in tow, laid Owen down for his nap, and checked my blog reader to find out that this little Princess Lindsay is getting her new heart today, just one week before her first birthday!!!!
Please say a prayer for my hubby that his infection hasn't made it's way inside to his organs.. that would be bad! If he needs surgery or a procedure done, please pray that things will go smoothly and we can have him home soon!

Please pray for my sister Kelli that her baby girl is okay and that she's just really squished and ready to come out!

Please pray for sweet Lindsay's as she gets the gift a whole heart!


What a day!!

Lazy Days of Summer

The temperature in my car read 107 degrees today. Unless we want to bake ourselves, we try to stay indoors from eleven to five each day. I call these the lazy days of Summer, because we are forced to stay indoors and relax. Today was no exception....

Owen had his afternoon bubble bath after smearing pinto beans, string cheese and yogurt all over the place.

Caught in the act... evidence that Owen was drinking the bath water... check out that bubble beard.

Mr. Owen was clean, lotioned up and in his pj bottoms by three in the afternoon. I told you these are lazy summer days! After cleaning up the flood on the bathroom floor, thanks bud, I found Owen chillin in bed calling anyone who will listen. Notice how he uses his feet to hold the phone? This is a signature Owen move. He thinks he has four hands and while we think it's humorous... his therapists don't.
See what I'm talking about... he'll play with his feet all day long. Now if he would figure out that he can use those feet to walk.

Owen is up to 6cc's of Captopril 3 times a day, along with his 7 other meds. The good news is, he's tolerating the higher doses and he's acting (energy, feeding, ect) better than he ever has. I can't imagine what he'll be like on 20cc's 3 times a day... we will soon find out.

More on our lazy days of summer tomorrow... Kamryn will be home and we have a fun craft planned.