Quick Cardiology Update

I emailed Owen's cardiologist at UCLA on the 24th to notify her of our discoveries. Carson found a donor card that was given to him after Owen's Norwood in February. Dr. Pearl had to use a patch during the surgery and up until now, we never really thought anything of it. It turns out it was a donor patch from another human so that explains why Owen's antibodies are SO high.

Dr. Halnon replied today and stated that they are still not sure which particular antigens he's developed antibodies to. Until they get this information, they won't know how to list him for a transplant. She said they should have a plan of attack soon. She said the donor tissue he received EXPLAINS why his antibodies are so sensitive.

Meanwhile... we WAIT and see Dr. Stock (our Phoenix Cardiologist) on Monday.

Eleven Months Today

Guess how old I am today?

I'm 11 months old... and that means that my birthday is next month! My mama has something FUN planned to CELEBRATE my first year. I've had a busy year... mama says I won't remember it though... it's probably best. You want to know how amazing I am?? Ok.. I guess I'll tell you!

* I finally tipped 20lbs on the scale... woo hoo.. I really have my NG tube to thank for that. I just get too tired to eat sometimes.

* I can sit on all fours... only for a second or two though... don't even think about saying the "crawling" word... it's WAY TOO HARD! I'll figure it out when I'm good and ready.

* I can say "dada"... I always COULD, I just didn't WANT to. Sorry mama... I'm saving your name for later. I have also mastered "AAAAHHHHH", "na na no no no no no", "la la la la la", "ay ay ay aaaayyyyaaa".

* My silly therapists keep trying to get me to stand on my legs... with my feet flat on the ground.. and they want ME to do some of the work!! It's just CRAZY and I don't think so!

* I LOVE that I was given two feet, because I use them like my hands. Wonder why we don't just get FOUR hands?? It would be a little easier.

* Santa brought me ALL kinds of balls for Christmas. I REALLY like to roll them, throw them, but most of all... EAT them! There's also a lot of toys that make crazy sounds and then my family says "ROAR like a Lion"... why do they want me to do that? I'm NOT a lion.

* Guess how many teeth I have? You don't have to guess, I'll just tell you... EIGHT! I have four on top and four on the bottom. There are more at the surface, but they don't count til' I can use em'.

* I decided to forgo the bottle.. the formula is just YUCK. Then mama tried baby food... YUCK again. I eat what they eat! I LOVE to eat! Why do I have to get so tired though? I'm supposed to have 900 calories a day... yeah whatever.

* I'll tell you a little secret... I LAUGH just because it's funny. I laugh because everytime I do... it makes everybody else laugh. I laugh because it makes me feel good. I LOVE to laugh.

* Well, I'm going to take a nap now. Thanks for visiting our blog. My mom is a bit addicted to blogging, but it's okay.... I get to sit on her lap and rip up all the papers and throw things ALL over the floor! Blog written by Mr. Owen himself! I tell you... this Boy is AMAZING!

Christmas

What a WONDERFUL Christmas!!

It all started at 2am when Kamryn tip toed into our room...

K: I think Santa came, I saw the light on in the family room
Me: Kamryn, those are the Christmas Tree lights, go back to bed!
K: I can't sleep!
Me: TRY! It's 2AM!

3:00am
K: Mom, Mom... it's 3!
Me: GO BACK TO SLEEP!! We aren't about to wake up at 3am.
K: I CAN'T SLEEP!
Me: I'll tuck you back into bed, you are going to sleep a little longer.

4:00am
K: Mom, I still can't sleep!
Me: Come out to the kitchen with me, I have to get Owen's formula.....
K: YEAH!!! Mom, SANTA CAME! He ate the cookies, and LOOK at all the presents!
Me: YEAH... ok, back to bed.
K: What do you think he brought us?
Me: I don't know... we'll find out SOON!
K: I'm not tired.
Me: Hmmm... I am. I'll tuck you back in.
K: (whining) I'll never be able to sleep, I just can't sleep!

7:30am
K: ZZZzzzzzzZZZZZZzzz
O:ZZZZzzzzzzzZZZZZZzzz

I first need to start by thanking Santa for not overdoing it in the TOY department this year! Kamryn got WII and DS Games, while Owen got BALLS... LOTS of balls!

We went to Justin and Larissa's to celebrate Christmas withGrandma Kathy and Brant
The Girls and Connor played in the rain. The BIG boys played a little Rockband! Owen got LOTS of toys to chew on and break through his many new teeth. Kamryn got yet another DS game (which she LOVES)!

Then we headed over to Grandpa Greg and Grandma Vicki's to spend time with my family. Gigi and Kamryn were SO excited they were handing out gifts to EVERYONE! As much as Kamryn enjoys tearing into presents... I think she enjoys watching others open the gifts she GIVES them even more.

Kamryn got a new 24" bike from Grandpa and Grandma. Now we have to teach her how to ride it... YIKES! (I know.. bad parents... we never taught her how to ride a bike)

Owen got a ride on of his own... a choo-choo... too bad his feet don't touch the ground yet :(

Owen gettings some LOVE! Owen hadn't napped, so by 6:00, he was exhausted. THEN, he got his second wind at around 8 and stayed up giggling in his crib. Such a silly guy!

We were very fortunate this year... not only to spend time with ALL our family, but to have Owen HOME with us!

Christmas Card

For those of you that I didn't send a card to... Here it is!! Merry Christmas!!

Christmas Fun

Last night was the Simmons Christmas Party with Carson's Dad and Monica. Once again... they outdid themselves and the kids had a great time!! Gingerbread Houses, treats all around, cousins and family, and even SANTA made a special trip from the North Pole... on his way out, he dumped a bunch of snow on the driveway. The SNOW was a BIG hit with the kids!! Who would have thought that a tiny pile of snow could cause such delightful squeals... then tears (due to freezing fingertips)... and that's just one reason we don't live in the snow.

Darn it... I thought I got them ALL... Karlee and Owen are missing!

Monica had every Christmas Hat imaginable! Owen wasn't as amused as the rest of us.

One party down and a few more to go! Tis the Season to PARTY!!

Daddy's Whiskers

Nothing is better than Daddy's scratchy whiskers on Owen's ticklish neck and the GIGGLES that are made!!!

Owen's Antibodies are HIGH

I just received a call from our cardiologist at UCLA and the lab work came back with crummy news... Owen's antibodies are HIGH. It's possible that all his blood transfusions that he's had through the first 10 months of his life have caused him to build up more antibodies than the average person. This isn't good for a transplant patient because the higher his antibodies are, the higher the risk of rejection. It doesn't mean that he won't be listed for a heart or even receive a heart... but it significantly limits the donors. He will most likely have to have a donor with an exact tissue match.
Dr. Halnon, Owen's UCLA Cardiologist, will be ordering more blood work to determine his titer levels. I'm not exactly sure I understand entirely... YET... (because I will learn), but we want the titer levels to be LOW. Dr. Halnon will also be ordering some tissue type testing be done. The UCLA team will also be discussing possible treatments of the antibodies to "kill" them off. It sounds like we'll be visiting LA in the near future for possibly another cardiac cath and treatments to reduce his antibodies.

We are going to continue to enjoy our wonderful Holiday season and pray that 2009 brings Owen a new heart and a chance for a healthier life!

Eating Machine

Just six short months ago, Owen wouldn't put anything that resembled food, in or around his mouth. What a LONG way he's come with his eating and I couldn't be more thrilled!! It's taken patience, HOURS in the high chair, persistance, and countless rejections. Through it all, we've tried to make eating FUN and POSITIVE. I am proud to say that Owen is becoming an eating machine! He eats almost anything we offer him, he'll use any utensil we place in his path, and he loves to sip on his water, juice and milk.
I can't get too excited because he is still no where near eating enough calories or volume to rid of the tube! In fact, he still gets 100% of his formula through his NG and gobbles down solids the rest of the day. Here's the other kicker... he's losing weight?! It's a mystery (I'm sure heart related), but we will be going to GI next week to see what we can possibly do to plump him up. Personally, we think he's plump and perfect the way he is... BUT, these cardiologists don't like to see weight LOSS.
So it looks like the NG tube will be sticking around for a while longer. If the next six months bring as much progress as these last ones... well... let's just pray for that!!

A Week in LA

It's great to be HOME! We had a great time together in LA... visited hospitals, Owen had transplant evaulations done and we even snuck in a little DISNEY time during our hospital breaks. Coincidentally, this was the week that some of Carson's family was at Disneyland, so Kamryn got to enjoy it with her cousins. Disney was a nice break from the rest of our crazy trip.

Kamryn and Owen in front of the Main Street Christmas Tree

Kamryn's Magical Tinkerbell face painting
I had to put this picture in because it's the only one that I am in front of the camera or NOT in the hotel room with Owen. Kids... I was there!!

Splash Mountain... NOT Kamryn's favorite ride Owen's face after we just went down the big fall in Pirates of the Carribean

Carson and Kamryn in Autopia... we have 7 more years before she'll REALLY be driving

Grandma Monica braving the teacups with four grandkids Mad Hatter's House

The whole gang .. minus myself because I am behind the camera

It's a Small World all lit up Christmas style

And this is how Owen and I spent the rest of the day while everyone was playing at Disneyland

Now to the medical stuff... We started at UCLA Medical Center where Owen had started with an echo. Moved upstairs to meet the cardiologist who spent over an hour discussing with us transplant options and risks. We met the transplant coordinator and social worker who not only were there to answer every question, but also made us feel at home our entire visit. We met the cardiothorasic surgeon and the surgical NP that will be working with Owen during the actual transplant and they were wondeful. They gave us a tour of the beautiful NEW hospital and UCLA campus (it's like it's own little town). The PICU and Patient Step Down rooms were large and family centered so I could stay and sleep with Owen pre/post transplant. Then they drew Owen's pre-transplant bloodwork to check his antibody levels... this is going to be a huge indicator of his risk of rejection if he were to get a heart. PRAY for low antibodies.

Later, we visited CHLA in the ghetto of LA. We didn't want to make a decision based on location but more of the skill of the doctors. They seemed disorganized, the lead surgeon hadn't even looked at Owen's charts, and they had nothing much planned for our visit. The surgeon we did meet gave us a lot of information and said she also thought it was best for Owen to go straight to transplant. We didn't feel that CHLA would be the best option for Owen. It was an exhausting two days, but we have chosen UCLA as our final transplant facility and couldn't be happier!!

The next step is to get the lab work back. If everything is okay, he'll most likely be listed as a status 2 (at the bottom) for the time being while he is home and doing okay. They also mentioned us bringing Owen out for another cardiac cath soon so they can do just a little more ballooning of his heart. The reasoning behind transplant vs. corrective surgery is this... They can fix his Glenn narrowing but it still won't improve his pressures enough to qualify for the Fontan (the 3rd stage HLHS surgery). Then, they could replace the tricuspid valve, but it will most likely make things worse as the blood won't be able to backup in the atrium as a release. On top of that, his function is still just "BLAH" .

We're really on this journey now and we've jumped in with both feet. It's all a bit scary, but we know in the end that if things work out as we hope, then Owen will benefit from a new heart. We aren't expecting miracles, it's never going to be easy, we're just replacing one heart issue with another.

Quick Update in LA

We're still in LA... lots of info to share when we get home. Just to hold you over ... here's the basics. We're at UCLA medical center today and we have done ALL of Owen's pre-transplant workup. We will wait to get the test results back to indicate our next step, but he will be listed soon. So far, we are completely impressed with UCLA.. the area, the hospital, the staff... amazing!

We are off to CHLA tomorrow morning for the same workup. Busy weekend, but SO much information. Looks like our next step is a NEW HEART for OWEN. Only time will tell how long, but the good news is we can come home and wait.

Off To LA...

We still haven't heard from CHLA regarding anything... but we were advised to keep our appointments with UCLA. If something did go horribly wrong with Owen, we would at least have UCLA as a place for care. So, our appointments are scheduled for Wednesday and Thursday .. as in tomorrow. I haven't packed or done much to get ready as I was waiting to hear from CHLA. So, here I am (supposed to be) packing and getting ready for our little road trip... we are leaving today!!

WISH US LUCK and we'll update when we return!

Christmas Card Outakes

I took some snapshots of the kids for Christmas Cards... these are the outtakes....

I'll post our Christmas Card as soon as I send them out.... I don't want to spoil the fun! I went back and forth on whether or not to keep Owen's tubes IN for the pictures... but it is a part of HIM right now, so why change him? HAPPY HOLIDAYS!!

Oh Christmas Tree

We got the tree up and almost decorated. It's starting to FEEL like Christmas as our temps drop into the low 70's. The twinkling lights are taking over the neighborhood. I'm almost done shopping ... is it still shopping when you buy everything with a click of the mouse? We're getting ready for our family road trip to LA. We are still waiting to hear final word from CHLA and then we'll be on the road. Meanwhile... we wait...

Oh how I LOVE this time of year!!

Tube Free

It was only temporary until Owen turned a beautiful shade of blueberry blue... but he was TUBE FREE! For those few minutes, I thought to myself how wonderful it would be to never have to put the tubes back on his face. Owen brought me back to reality when he started changing colors... his tubes were back in place in record time!

On another note... Guess what this little man ate for dinner last night??? Ok, you don't really have to guess, I'll just tell you...

ENCHILADAS and CHEESECAKE!!

Word from UCLA

I just got a call from the cardiac transplant coordinator at UCLA and she wants us to come out on December 11th... seriously... NEXT Thursday! We're still waiting to hear from CHLA because we want to coordinate the two visits since the hospitals are 45 min apart.

Now it's on to lodging options.... Ronald McDonald house says you can't reserve a room, but to call 24 hours in advanced?! Hmmm... so just show up on their doorstep and hope they have a room? If not... we drive around and find a random hotel? I don't like surprises... I'm a PLANNER and I will make sure we have a PLAN before arrival.

I'm hoping we'll get a good feel for the hospital, surgical and cardiology teams so that we can make a decision of whom to continue Owen's care with.

MEANWHILE... here is how Owen continues to spend his days.. and NIGHTS!

HAPPY 32 YEARS!!

HAPPY BIRTHDAY CARSON!!

You are the BEST Daddy and Hubby we could ever ask for! We LOVE you!!

Ten Months

Look who's 10 months old!!

You are sitting up like a champ and you would PLAY so much longer if your little body would keep up with you. After 15 minutes of sitting and playing, you throw yourself back and just need a BREAK! Laying down doesn't stop you either... you just roll from side to side getting anything you can get your hands on. Chewing and slobbering every toy in the house if your main focus right now. Thanks to all that chewing work... you've got SIX teeth and more on the way!

We keep trying to show you how to crawl, but you have us figured out. If you learn to crawl, then you won't get the luxury of riding on mommy and daddy all day. Walking is definetly NOT on your to do list!

You don't say many words.. .mostly just vowel sounds, but we just KNOW what you want. You open and close your mouth when you are singing and talking... the best part is... NOTHING comes out! When you do this... we all laugh and mimic you so that you will continue doing it because it CRACKS us up!! You continue your passion for REAL food. How dare we continue to offer you that mush out of a jar when we are eating the GOOD stuff! If we can eat it, then so CAN you!
Most of the time you are HAPPY and SILLY! You have figured out that if you cry or complain "na, na, no, no, na, na" then SOMEONE will most definetly come to your rescue. You have also learned that if you kick your leg a little harder or scream just a little louder it speeds up the response time. Mommy and Daddy have you all figured out though... it's Sissy that gets suckered in everytime!
CUDDLING is our favorite activity with you!! Mommy, Daddy, Sissy (just about anyone) will cuddle you anytime or anywhere! You know that if we're holding you and we are ready to set you down, all you have to do is lay your head on our shoulder and we MELT!!

HAPPY TEN MONTHS MR. OWEN!

What a Night

10 is the number of months that Owen is today!!

20 is the number of lb's that he weighs.

29 is the number of his inches from head to toe.

38.5 celsius was his temp (which converts to 101.5) when we finally called cardiology today

68 is the percentage of oxygen that he was at when his lips were blue

1.5 is the liters of oxygen that I had to crank him up to in order to reach...

80 percent... which is acceptable

10 is the minutes it took cardiology to respond to my call

5 is the hours we spent in the ER at Phoenix Children's

0 is the time we spent in the PICU

1 is the number of tries that it took to get his IV in... YEAH

4 is the number of blood tests they ran

12 is the number of his white blood count... this translates to NO infection in his blood

40 is the number of minutes it took Dr.'s to confirm his chest xray was A-Okay

30 is the minutes it took us to get home

8 is the hours of sleep I can't wait to get in our OWN beds tonight!!!

Happy Thanksgiving!

Does anyone else feel like they're going to POP??? Seriously... why are there SO many delicious choices at one meal?? And why do I have a bottomless pit for a stomach?? I think I gained 10lbs today. After dinner, we took a walk and soaked up our gorgeous post rain weather!

Mr. Owen LOVES to be outside!

Kamryn digging up "treasures"
Oh Dad... what is that silly face??

Grandma, Carson and Mom... say TURKEY!!
These rugrats hardly ate anything... so of course they had more than enough energy to wrestle on the floor.

I am Thankful for....

My loving, carefree, make me laugh out loud hubby...

My smart, artistic, witty, beautiful Kamryn...

My hip riding, rasperry spitting, miraculous little Owen...

Our famlies and the support they give us...

All our friends out there...

My Faith...

I hope you all had a wonderful day filled with family, friends, yummy grub and full of THANKS!!