Owen's Birthday Party

Today was Owen's 2nd Birthday party. It was a last minute party at the park and the weather couldn't have been more perfect at 65degrees. Owen spent the first half of the party swinging in his favorite swing....

The other half of the time, he was spoiled by his big sis and all his older cousins. They pushed him around and around in his car.

Tatum, Connor, Rylee, Kamryn, Gigi and Owen

Here is the adorable baby Livvy.

Me and my Pops.
Kelli (my sis), Uncle Roger and My Mom
Kathryn (Carson's Mom) and Brant

Mister Luke eating a cupcake bigger than his face.

Tanner (Carson's Bro), Luke, and Larissa (Carson's Sis)

Brant and Tatum

Owen loves to blow out the candle... on his actual birthday we had to relight it several times, just so he could blow it out! One time was enough today.. thank goodness... I was starting to get worried over his love of the flame.

And then he ate a whole entire sprinkle. That's it!

It was a nice little party at the park surrounded by family. Here is our attempt at a family picture... HA... it never goes as planned does it.

I still can't believe our baby is TWO!!! I hope your birthday was perfect Mister Owen!

Birthday Boy!!

Happy Birthday Owen!!!
Today you turned two.

We LOVE you SO much!
Every moment with you is a blessing and you make our days brighter!
Hugs and Kisses.
Daddy, Mommy and Bo-Bo

Blending Foods and Cardiology

I don't know why I insist on torturing myself. As if moving and searching for a house (more on that in a second) isn't enough, I decided to start Owen on a blended foods diet this week.

I spend at least an hour a day searching the MLS, private listing, property management sites, craigslist, you name it. All the houses are starting to look the same and I might just have to flip a coin and go with it. I am starting to pack up our home and it looks worse than when I started. Boxes with leftover space for something, piles to go to Goodwill, overflowing trashcans outside and I keep reminding myself that it will be over soon! HA.

Owen went to Cardiology today and his echo shows the same ol' stuff. Decreased function and super leaky Tricuspid Valve. His tricuspid valve is supposed to pump the blood from the Atrium to the Ventricle and then out to the body. Owen's valve is so leaky that it regurges the blood back from the Ventricle into the Atrium and his Right Atrium is super engorged. That blood obviously isn't going to the body like it should. Dumb ol' leaky valve.

The good news is that we can just keep watching him and see Dr Stock in about six weeks. Six weeks after that visit we'll head to Stanford again. I'm pretty sure I'll be needing a vacation by then!

The bad news...

Owen has still been puking on the Pediasure and Peptamin Jr wasn't any better. I spoke with Avery (Bela's Momma) and she has had Bela on a blended diet for about six month and has seen great results. We talked the other night and she gave me all the motivation I needed. It makes sense all of a sudden... why would his tummy feel good with Pediasure being pumped into him continuously when the main ingrediets are corn syrup and sugary goo?

Starting yesterday morning...

I started with yogurt, 1/2 banana, whole milk and lunch turned into almond butter, cottage cheese and apples, then came dinner of refried beans, avacado and a shot of olive oil. He had some other blended snacks in between and guess what?? Not one single puke!!!

It makes perfect sense to me now.

I was always scared to go against the GI doctor's advice, which was "we don't recommend blended formulas because it clogs the tube and there is no way to know how much fluid ounces, proteins, fats and calories you are giving him... why would you want to go through all that work when you can just pop open a can and all the nutrients are there for you?"

I am trying not to stress the details... I think of what a healthy toddler would eat on a day to day basis and throw it in the blender for him. Then I add lots of healthy fruits, veges, oils, grains and I realize that he's probably getting a more balanced diet than most kiddos his age that eat orally. In all honesty.. Kamryn survived on PB&J sandwiches, chicken nuggets, apples, bananas and french fries... look how great she turned out!!

I am still supplementing with formula when needed and I will have my Pediatrician send up an order for Compleat formula which contains real food rather than sugary goo.

I can already see a difference in Owen and it's only day 2! If anyone has information, recipes, advice.... please email me at [email protected]. I know I had a post about this in October about wanting to start him on real foods, but the nutrionist at Stanford and GI here said "they recommended against it." At the time he wasn't gaining weight. Now he is up to 27lbs and my Mommy instincts are taking over.

Can you believe that Mister Owen will be TWO tomorrow?? I think I should probably take a day away from packing and house hunting to celebrate!!!

A Little Update

In just 3 days.... This little guy...

is going to be...

turning TWO!!!

We are very excited to celebrate with him!!

We spent Saturday in Tucson celebrating Grandpa Melvin's life and enjoyed time with family. Now we are back to packing the house, taking loads of stuff to Goodwill and searching for a home. We have this week and next to get everything done and moved into a home that I am yet to find. I have no idea how I will get it all done, but I will!!! I'm thinking positive.

Owen has an echo on Wednesday and I'm totally anxious to see what's going on in there. He has resumed his 4 times a day puking habit, but the week without it was a nice break. Still no idea why he is puking so much, but the Peptamen Jr didn't help much and so we're back to Pediasure. He has gained 3lbs in the past 3 months, so something is working out. I have another post on his eating and plans for that.. so I'll save it for later.

As far as the Gtube goes.. Owen is doing SO MUCH better. He was in alot pain last week, then we saw his surgeon and she changed the tube out. The xray study came back perfect and since then, he has stopped cringing and screaming. Maybe the tube I had put in wasn't placed correctly or was pinching him?? I don't know.. but we are happy that he is feeling better!!

Now if we could get him to stop puking, we'd all be happy! Then again.. when he's not puking, he's feeling icky and his tummy is too full. :( We'll figure it all out eventually. Let's just pray for decent echo results on Wednesday!! I'll update then.

Gtube Xray Study

I received a call at 9:30 this morning from Owen's Gtube Surgeon. They wanted Owen to get in for his Gtube study today! After several hours of fasting, I took him to his appointment with the Radiologist.

These procedures get harder and harder the older he gets. He broke my heart while we sat in the waiting room and he kept saying "Eat? Eat? Peeezz??"

We took him back to the room and he was not amused. I stripped him down, laid him flat on the xray table, pulled his arms over his head and the nurse injected dye into his Gtube. She wasn't the smartest one in the bunch as she left the medicine port open on the tubing and got dye all over Owen's clothes. Then she almost pulled his Gtube out when she took the syringe to get more dye and then said "oops, I forgot to disconnect him!" Seriously???

After 10 minutes of xrays and screaming, the Radiologist said that everything looks PERFECT!!

Great news! Why is he still in so much pain??

He spent the rest of the afternoon with puking and diarrhea.

I don't know how much more testing I want to subject him to. Perhaps he just needs more time for the Gtube site to heal!?

Appointment with Gtube Surgeon

I am such a slacker and have no pictures from the last few days. I have been running around like a crazy lady trying to find a house to move into... in two weeks!! I found a few houses that I LOVE, but they are already under contract. I'm sure something will pop up soon and I will jump on it as soon as it does.

Meanwhile...

I took Owen to see his Gtube Surgeon today and we ran into Avery and Bela. I wish we had more time to chat. It's always great to catch up!

Back to the appointment....

Dr. G couldn't find anything wrong with Owen's Gtube or his tummy. There is no redness, swelling, granulation tissue, bleeding, ect. We went ahead and took out the old tube, remeasured and put in a new one. The measurements of the old tube and the placement were perfect. Why is he in SO much pain???

She is scheduling a Gtube study. The radiologist will inject a dye into his tube and take multiple xrays of his tummy so we can see what's going on in there. If that doesn't tell us anything then we'll have the GI doctor do an endoscopy. That's where a tube will is put down his throat into his tummy to see what's going on from a different perspective.

Tonight has been brutal. Owen will be butt-scooting and suddenly stop and start screaming out in pain. All I can do is keep up on the Tylenol until we figure it all out. Poor guy.

Bank Approved **Updated**

**Update**
Just got a call from our real estate agent and they moved the closing date from Jan 30th to Feb 10th. I guess I should should get off the computer and start packing. Speaking of packing...

Anyone have any boxes???
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Original Post

The fun is about to begin....

The bank approved the buyers offer and our house is almost "officially" sold. The approval letter stated the closing date of 1/30 and I sure hope that was an error. We're hoping to get it pushed back into February so that we have time to pack up our boxes and find a new home. We have been looking, but can't make any offers on a new home until we know for sure that the bank would approve the sale of this one.

We're going to be renting for a couple years until life settles down a bit. Owen needs transplanted, I want to finish school and the housing market needs to stabilize. Then we'll hopefully be in a position to purchase another home to grow into.

We're looking forward to the next adventure. Did I mention I like moving?? Decluttering and donating is seriously SO fun for me! I like very minimal things in my home and zero clutter, so I am anxious to get the move on!!

Now.. for a quick Owen update!!

I took Owen to see his GI doctor yesterday. It sounds like a gastric emptying study would be informative, but useless, as the medication to treat it aren't compatible with his cocktail of heart medications. We switched his formula from Pediasure to Peptamen Jr., which is more broken down. The smell and taste of the new formula is nasty, but he's not drinking it anyway. I just hope it helps his little tummy feel better. I'll know in a couple of days how he's feeling.

Tomorrow we have an appointment with Owen's Gtube surgeon to solve the mystery of the Gtube pain!! It's not infected or swollen on the outside, so I hope it's as simple as just needing a new tube size or adjustment?

Until then.. I'm off to clean out from under the beds. I'm sure to find many "treasures!"

Grandpa Simmons

Grandpa Simmons (Carson's Grandpa) passed away on Saturday. We love you and will miss you very much!! Grandpa Melvin, as Kamryn called him, lived in Tucson and we drove down to visit him and Grandma as often as we could. Our last visit was just before Christmas and we are so glad that we got to say Goodbye and tell him how much we loved him. Our kids are so lucky to know their Great Grandparents! We will celebrate Grandpa Melvin's life on Saturday in Tucson.

Mic-Key Pain

Owen's poor tummy has been causing him so much pain ever since his tube got pulled out a few weeks ago. There is no infection (that I can see on the outside), but he cringes and screams out in pain many times a day and at night. This is what a Gtube looks like....
The balloon is inflated inside his tummy and the button is on the outside so that I can feed him. When his tube got pulled out, the balloon was inflated and so I'm sure it caused a little trauma to his tummy. We have an appointment with the surgeon next week, but has anyone else had any experience with this?? I feel terrible for him and hate that I have to keep giving him Tylenol for the pain. Any advice would help!!

On another note..

Owen has not puked since last Wednesday. While this should be great news, he has traded puking for irritability. The constant puking (and when I say puking, I mean the entire contents of his stomach) made him feel better and he would go on to play and eat orally. Now that he isn't puking, he feels icky and doesn't want to play or eat.

It's a mystery to me.

We have an appointment with GI on Monday and I am going to request a Gastric Emptying Study. From what I read, it sounds like they would give him a bolus of food and continually xray him for an hour so that they can watch how the food moves through his stomach.

I know most of the reason for the puking and irritability is his heart failure, combined with the 8 medication he takes 3 times a day. On top of it all, I am giving him 1300 calories a day and he only gets 4 hours a day without being pumped full of food. Just one of these factors would make me feel pretty crummy and he has to deal with all of it on a daily basis.

He's such a little trooper!!

An Afternoon at Home

It was 77 degrees yesterday. We got the car washed, ran some errands, went for a walk around the neighborhood, played on the swings at the park and I realized how normal life has become.

I picked up Kamryn at school and was thrilled to see her latest report card with all "A's" and perfect comments. We're planning her special date night to celebrate!

Rylee came home from school with us and the girls immedietly started drawing Sassy faces. Speaking of faces...
Owen loves to do what the big kids are doing (drawing), eat what they're eating (popcorn and lemonade) and sit at the table with them. I was worried about how he would do with popcorn, but he was chowin' down on it. Really Owen.. you can't eat yogurt, but you can eat popcorn?? I'm starting to think this eating issue is morphing into a little toddler "I don't want to eat that and if I pretend I can't eat, then I won't have to eat it!"
Kamryn loves to watch music videos, so the girls were rocking out to a little Taylor Swift. Of course, this totally had Owen cracking up and entertained and I got the dishes done. :)
After about 15 minutes of hearing "U-en?" (open), I caved in and opened up one of Owen's birthday present. Is he really going to know the difference on the 28th? I found this little pop-up tent at Ross for $10 and he LOVES it!! Look at that face again...
Do you see him on all fours?? He transitions from butt-scooting to all fours and then takes a few crawls forward and back on his bum. I never thought he'd actually crawl, I might just be wrong!

I almost forgot to mention that Owen didn't puke Thursday, Friday, Saturday, Sunday, Monday or Tuesday. I don't know what to do with myself all day when I have no puke or laundry to clean up. Well, he reminded me how much I was missing out on when he puked three times this morning, before 10am. Sigh.

Little Guy, Big Attitude

I can hardly believe I haven't posted in five days!! Kamryn and Daddy went back to work and school. We resumed our busy therapy schedule around here. I've spent countless hours on the phone with doctors, insurance and mortgage companies. Such is life... our normal life.

I spent a few hours on Wednesday talking with Owen's GI nurse, which followed with a call from his GI doctor personally. The puking has been out of control and it wasn't getting better. We agreed to take him back to Good Start formula at 24 calories and see how he does. I told GI that as soon as he puked again, I would make the switch. Here's the kicker... he totally stopped puking and hasn't puked since!!! I didn't do a darn thing. After months and months of puking 3-6 times a day, he just stopped out of the blue. I'm just hoping the pukies are gone for good. Another answered prayer perhaps?

Owen will be two in a few weeks and our baby is now a toddler. He is full of personality and knows exactly what he wants. He's full of personality, so easygoing and remains happy 95% of the time.
The other 5% is when he wants what he can't have. "No Owen, you cannot eat toilet paper.. throw toys at people...rip the pages of that book...play with Kamryn's DSI...pinch Mommy... change your own diaper... get out of bed at 3am...throw things out the window of the car while Mommy is driving...and you probably shouldn't prank call everyone on Mommy's cell phone contact list."
Owen is very much a Mommy's boy who likes to be held and demand my attention ALL the time. While I LOVE to shower this little man with attention and snuggle him constantly, sometimes it's just not easy to cook dinner and hold a 27lb squiggly toddler on my hip. Then he makes me feel guilty....

until I remind myself that he's totally faking it because Kamryn will walk in the room and he can't help but start laughing uncontrollably.
Our favorite face, as of lately, is the pouty face. He can only hold the face for about 2 seconds before he starts to smile, but we love it!!
It's true that our baby boy isn't a baby anymore. He knows what he wants and he knows how to get it!!

A Birthday and More

We had a great time celebrating Kamryn's 10th Birthday! We went to eat at Brio, a small Italian restaurant, and the weather couldn't have been more perfect at 68 degrees.
There was a little bit of drama for this little guy when Daddy accidentally stood on his feeding tube and it was attached to the Gtube, you know where I'm going with this. The whole Gtube, inflated balloon and all, came out of his tummy and there was formula gushing everywhere. We dashed to the car and I just so happened to have a Gtube kit in my car... hooray for that! It wasn't so bad (for me at least) to put the new tube in and blow up the balloon. I'll be happy if that never happens again. Daddy felt awful!!

We went back in the restaurant and resumed our meal. Such is life in our family.
My family came over that night and we had Kamryn's favorite chocolate mouse cheesecake for desert.... this girl has great taste in deserts!!
I still can't believe our baby girl is 10!! This was also the last week of winter break from school. Kamryn goes back tomorrow and I'm going to be so sad. :( It's great to have her home and Owen loves the attention all day. Only 8 weeks until spring break!
This afternoon... Owen watched his first tv show ever!! He won't watch tv, in fact he won't even acknowledge that it's on. Whenever he's in the hospital, I try to find something (anything) that will keep him occupied for even a few minutes. TV just doesn't interest him. SO.. this morning we were at Blockbuster and I had some free rentals so I grabbed "Yo Gabba Gabba". It was a bit creepy for me, but Owen watched it for about 10 minutes and I got some laundry done. I call it a success!!

Another little bit of exciting news is that Owen is almost caught up on his immunizations! He hadn't had any shots until August when I got a call from the transplant team at Stanford stating that the immunologists require ALL transplant patients to be fully immunized. Darn it. So we have been doing several shots every month to try to catch him up. Those shots, combined with his two synagisis shots every 28 days, have been making for alot of needles. He should be done with all of his shots in March and I will be so thrilled for him!

He never ceases to amaze me though.... every 28 days we walk into the pediatrician's office with a smile on his face. He chit chats with the nurses and is very helpful. Then the nurse brings in the silver tray with the needles on it and he gives us the helpless look.. .my heart breaks... he gets his 5-6 shots in his thighs... sheds a few tears.. and he's as happy as can be again. I don't know where he gets all his courage.
One last thing... we got our followup appointment scheduled with Stanford for the first week in May. It's so surreal to look at the big picture and realize that at some point, in the not so distant future, our family will be divided and Owen will be in need of a new heart. Things seem so normal now and the rest of it is like a dream.

HAPPY 10th BIRTHDAY KAMRYN!!!

Ten years ago, our baby girl made us a Mom and Dad. She was, and still is, perfect in every single way! Join us as we take a walk down memory lane.

January 3, 2000... 6lbs 13oz, 21.5" long

ONE YEAR

TWO YEARS

THREE YEARS

FOUR YEARS

FIVE YEARS

SIX YEARS

SEVEN YEARS

EIGHT YEARS

NINE YEARSTEN YEARS

Happy 10th Birthday to you baby girl!! We are so proud of you and love you in every single way!! We can't wait to celebrate many more birthdays with you. Here are you 10 month stats...

Height: 5 foot
Weight: 82lbs
Shoe Size: 7 in womens
Clothes: XS in teens
Glasses prescription: -6.25
Grade: 4th

LOVE YOU BABY!!!