Thanksgiving 2013

We had a great Thanksgiving this year, and we have plenty to be Thankful for.  We went to Carson's Sister's house to celebrate and most of the cousins were there.  Auntie Janesa (C's sis) was in town from San Fran to celebrate with us.  All of the girl cousins... they are getting so big!

This is what the boy cousins do for fun.  This is also one of the few pictures that I have with Owen wearing a shirt.  The boy likes to be in the nude most days.  I took him to get a nice button down for Thanksgiving dinner and he said.. "What?  You want to dress me up to look like a married housewife?  I can't wear that!"  I dressed like a married housewife and was proud of it! :)

The kid's table.

The weather was perfect!  The kids were outside riding bikes and playing in the backyard all afternoon. 

No shoes.. no shirt... the way Owen rolls.  Kam is full dressed, shoes, and accessories. My kids are so different!

We even got a family shot this year!

After dinner, we headed to my parent's house to celebrate with pie and to give Bridgit a Happy 1st Birthday hug!  The kids were on the trampoline most of the time.

It was a great day and we were surrounded by family.  Nothing is better and we are so thankful that we could all be together. We didn't go crazy with Black Friday shopping this year.  In fact, I spent most of my time on the couch, in my PJs, getting my shopping done online.  I love that it'll be shipped to my door and I'm done.

 We are off to go celebrate Bridgit's birthday tonight, Daddy's Birthday tomorrow and then we are off to Stanford tomorrow morning for biopsy #9 on Monday morning.  We just got a call from the RMH and they have a room available for Mr Owen.. so he is thrilled!!!

Rainy Weekend Roadtrip

It has been a rainy weekend in the desert. It's pretty obvious in the pictures that we don't see much rain around here.  On Friday, after picking up Kam from school, Owen couldn't wait to splash in the "puddles."  What puddles you ask? It may be the smallest puddle ever, but Owen thinks it's fantastic!  Please forgive his lack of pants... I can barely keep any clothes on him these days... he likes to be in his Birthday suit. 

Kam was a good sport and entertained him by splashing in the street.

On Saturday, we woke up and had a day trip planned to Benson.  After a quick stop at Starbucks for hot chocolate, we hit the road to Tucson.  We caravanned with Uncle Justin, Auntie Sussy, Auntie Janesa (she's in town from SF), Connor, Ry, and Tate.   It's a 2 hour drive to Tucson.. so my kids kept busy on our road trip. 

Owen bought the full collection of Home Alone at Costco the other day.  Who knew there was a Home Alone 4?  Anyway.. he was busy watching those, and Kam was listening to her jams. 

We stopped in Tucson at Eegees for lunch.  Daddy and his Sisters remember this place being pretty awesome growing up.  I think we all agreed that it was just okay... we'll skip it next time.

Four hours after leaving our house, we made it to Kartchner's Caverns.  We had purchased tickets a while ago to tour the caverns..they always sell out.  It was cold and rainy, but inside the cave was warm and humid.  It was fun.. as much fun as learning about limestone, stalagmites, and stalactites can be.  Owen was totally bored, but he liked exploring.  He had more fun in the museum pushing all the buttons and pretending to use the force to open the automatic doors at the entrance. I followed him around with hand sanitizer and he wore his fancy new N95 mask.  Kam had a great time with her cousins.  Owen found huge puddles of water and was soaking wet by the time we made it to the car.

We stopped in Tucson for dinner at Lucky Wishbone... their menu includes anything fried.  The best are the steak fingers, texas toast and french fries.  Super greasy and delish!  We stopped for gas and made it home by 7pm.  It was a long day, but I think we all agreed that it was a great time. 

Now that it's Sunday, the rain continues to pour.  I baked Snickerdoodles while listening to Christmas music, but I won't decorate until after Thanksgiving.  We have fun week planned, followed by Thanksgiving with family.  What are your Thanksgiving plans?

Thankful

Where has the week gone?  Do you ever feel like you are just running around, spinning your wheels, busy yet getting nothing accomplished?  That describes my week. I am on the phone, leaving messages, waiting for return calls.. insurance, therapists, school district...nothing is going in the right direction   You win some, you lose some.  The great news is that Owen is happy to stay home and run the show.  Look at this face... you know he's the BOSS around here. :)  If you look closely, you can see his top teeth popping in through the gums!

Owen had cardiology clinic yesterday with full workup (echo, ekg, clinic).  Everything looks fantastic!!  There are no words to express how happy I am to know that Owen is doing so well.. all the other stresses don't matter.

We have a little weekend getaway planned and Owen needed a new N95 mask.  Instead of the disposable ones we alway use, I thought I'd try something a little different.  He really likes it.  Some kids collect cards or trophies... Owen collects masks.

The week of Thanksgiving always gets me thinking about everything we are blessed with and how thankful I really am.  This year I am most thankful for Owen's donor family and their gift of life!! 

This Boy CAN JumP!!

I just wanted to share how amazing Owen is doing just four months post transplant. He has been working SO hard in PT the last few months to regain his strength and do more than ever. Owen has never been able to jump, run, play for more than 30 minutes without being completely out of breath.  His oxygen tubing limited him as well and he had a poorly functioning single right ventricle.  It's amazing to think of how great he must feel right now!! 

Today at Gymnastics (PT) he showed off his favorite new trick... butt bouncing.  This is harder than it looks.

Then he decided to blow us all away and show us some real jumping skills!!  The first time he has ever jumped on a tramp with two feet, got air, and didn't need our help.  This makes my heart so happy!!

After amazing us on the tramp, we headed to the foam pit where he balanced on a mat and gathered his "cannons". 

Then he threw his "cannons" to the "giant pirate ship" to "destroy it". 

Then he "crossed the sea" and had to "save the pirate ship". This boy has the best overactive imagination ever!!

We decided we would play catch across the foam pit for a while.  The mat he is standing on is super soft and hard to stand on... so he is working a billion muscles and balancing all at once.
At the end of his super fabulous PT session, Michelle gave him a prize. He loves gymnastics so much. It certainly gives him something to look forward to and we just got approval to add another day at the gym!! So proud of this boy!

Dr Oz 3 Day Cleanse...for ME.

In an effort to take time out for me and make myself a priority, I decided I need to start with my health.  The stress of the last five months, or five years {if I am being honest}, have taken it's toll on my health.  I have always been blessed with a ton of energy.  I don't get sluggish and tired very often, I don't get headaches, and I feel great most of the time.  I jiggle more than I'd like to and I need to get that under control for sure, but that is a daily struggle that most of us face. 

When I got back from our most recent trip to Stanford, I decided that I wanted to try some type of detox or cleanse.  My sis-in-law had just completed the Dr Oz 3-day cleanse and she felt great!  I had nothing to lose, so I waited until we had a 3 day weekend so that I knew I would have plenty of time to prepare and relax.  This was not about losing weight {which is an overall goal}, but rather a detox from stress, soda, sugar, dairy, ect.  I just wanted a fresh start! 

I ran to the store and got most of my ingredients at Costco.  I blend all of Owen's gtube feeds in my Vitamix using the majority of the items on this list, so I buy in bulk.  I used frozen fruit because I like my smoothies really cold and I don't waste any fresh produce either. 

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Now for my review of the actual detox cleanse.  Day 1 started off great... the green tea C made for me was really good, but the breakfast drink was way too sweet for me.  Too much fruit!  I chugged it down and took my vitamins, and wasn't hungry until the lunch drink.  I LOVED the lunch drink, which is totally opposite of every other review I read.  It was loaded with veggies and it had a fresh taste with the cucumber, lime, green apple and pineapple.  I really liked it.  It made a ton of volume so it was hard to finish, so I drank most of it and saved what was left and used it for my snack drink.  So I split the lunch drink into lunch/snack.  Then the dinner drink was totally good at first, but the cayenne pepper was disgusting. I know pepper is good for digestion, so I drank it like a champ, but yuck!  The best part of my day was the soak in the Epson salt bath... bliss... until Owen hijacked my bathtub.  I also have to give myself mad props for resisting the Mexican food we grabbed for dinner.. it smelled so good and I didn't touch it!

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Day 2 was a little tougher.  I didn't feel any better and I was totally bloated and felt like I couldn't drink another smoothie.  I went about my day and continued on because I was determined to get through this.  We went to see Thor 2 and I didn't eat a single candy, popcorn, nacho, or even Diet Coke.. and it wasn't torturous. I felt satisfied.  For dinner we grabbed Chinese (so I didn't have to cook) and the smell had me wishing I could just eat a piece of chicken.. but I resisted.  I had my cayenne pepper filled shake instead... gag.  I had a headache most of the day,.. caffeine withdrawl or detox.. I don't know.

Day 3, I woke up feeling better, still feeling like I was filling up with fiber and it wasn't going anywhere fast.  I drank my smoothies, and by the last one of the day I was thrilled to be DONE!  I don't know if I'll be blending up any foods for myself anytime soon, but it was an overall good experience. I didn't feel hungry, in fact I felt too full all the time.  I lost five pounds total but that was just a side effect. 

I had the result I was looking for... I have no desire to eat anything sugary, greasy, caffeinated or carb heavy.  Aside from a quick dinner last night of grilled fish tacos and guac, I have been eating really clean.  I don't crave the soda that I was so hooked on, so major plus there!  I will totally do a cleanse again, and soon, but I think I'll try one that is more veggie heavy, or cut out the high glycemic fruit.  Any suggestions of good ones???

Thor 2 and Veteren's Day

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It has been a relaxing three-day weekend around here.  Seriously, we have done nothing exciting other then take the kids to go see THOR 2.  Owen, being the Superhero lover that he is, couldn't wait for this movie to come out.  Daddy told him it would be cool to dress up in his Thor helmet and hammer... everyone commented on how cute he was as we were walking into the movie on Sunday morning.  "Everyone thinks I'm awesome!"   We picked the least crowded time to go to the movies and their cousins even joined in the fun.  Owen loved sitting with Connor, and thought he was pretty cool sitting in the big boy seat for the first time ever!  You'd better believe I scrubbed everything down with Clorox, had him wear a mask the entire time, and I think we avoided any germs. 

Kam was excited for the movie too... but I think she's a little more excited for Catching Fire to come out in a couple weeks.  She sat with Ry and Tate at the movie and so I actually was free of kids sitting with Carson.  Almost like a mini date, but not quite.  Thor 2 got two thumbs up from both kids!

I'm almost done with my 3 day Dr Oz cleanse, and I'll post about that tomorrow.  It's been super awesome (not), but I feel better and that's what matters.  Happy Veterens Day and thank you to all of those that have fought and continue to fight for our freedom!

Biopsy Results

I am so sorry I haven't updated my blog this week. Time just gets away from me and my laptop is on it's last leg. I have great news!! Owen got another ZERO rejection score on his biopsy!!! The entire team is impressed with how fantastic he is doing. In other great news... Owen's last two months of antibody testing have come back with ZERO antibodies!! This means that Owen is responding wonderfully to the IVIG infusions and it is nothing short of a miracle. Owen and his donor heart were meant to be and not a day goes by when we aren't overwhelmed with gratitude for his donor family.

Owen had a great visit at Stanford and his time in the Short Stay Unit was long but effective. We love the short stay nurses and you always see the same smiling faces. Owen said "look who's back in town" referring to himself when the nurses came in to see him and get his infusions started. He showed off his Halloween pictures and then request Child Life be paged for a visit.

We were discharged at 2:30am and headed to the hotel for a few hours of shut eye before packing up and going home. The airport was fun and Owen got his bean fix. He only wants peanuts (shells included), beans, chicken breasts and salsa this week. His appetite is so random, but I oblige. I can't imagine a better date than this!!

Thank you for all the good thoughts and prayers... we appreciate them all!! 

Biopsy #8

We are back at LPCH this morning for Biopsy #8. Owen had a great morning and was a total goofball.  He was chatting up all the nurses.. showing off his back hair which rivals that of Wolverine. 

He feels 'at home' here so it makes the whole process so much easier.  I walked him to the cath lab, no pre-med (Versed) necessary, and he went right to sleep with his mask.  Flavor of choice?  Strawberry, Cherry, Bubblegum cocktail.

Everything went perfectly... his pressures and function are fantastic and he's getting his post op echo right now in the PACU (recovery unit).  We will be discharged here soon and off to the cafeteria for some food... we have a hungry boy!  Then to the SSU (Short Stay Unit) for his long evening of infusions.

Hoping for great biopsy results tomorrow and I'll get the updates on his antibody results from his last infusions.  I'll post again from the SSU in a bit... is it too much to hope for a private room?! :)

We Arrived in Palo Alto

We made it to Palo Alto in time for lunch today.  Owen and I had a uneventful flight and hopefully took every precaution so we don't get sick amongst the symphony of coughs on board.  Yikes.  I about jumped out of my skin each time I heard a cough.. thankfully we were towards the front of the plan, next to the window, I bleached the area around us, we wore masks, and I sanitized like crazy.   

We grabbed our rental car, checked into our hotel and grabbed a few groceries at Trader Joes'.  Tonight we took a quick trip to the RMH for dinner and so we could catch up with friends.  Owen loves to work behind the front desk at the RMH and be "the boss".

We got back to our hotel in time to get bathed, packed our hospital bags and are ready to go to bed early.  Owen has an 8am biopsy tomorrow, followed by Cytogam and IVIG infusions.  It will be a long day/night and we are praying for more fantastic results!   I keep waiting for the other shoe to drop at some point.. but praying it doesn't.  Many prayers for tomorrow friends.. I will keep you posted. :)

Halloween 2013

Halloween has come and gone.  We had a great night and my kids have buckets full of candy they will never eat... because they aren't big candy eaters.  Owen has changed his mind several times this October on what he "wanted to be" for Halloween.  At the last hour, he decided it would be Wolverine and he rocked it!

Kam wanted to be a Supehero this year as well... introducing Spider Girl!

Owen said "Pretend you are fainting and I will save you in this picture..." 

Then the hero gets the girl and he laid a smooch on his Sis.  I love these two!

 

Then the other Zombies showed up.  Lucy was the best Zombie Cheerleader.. totally in character all night!

Gigi was the best Bride of Frankenstein!  How awesome is this wig?

These Trick-or-Treaters hit up the neighborhood for several hours.  Owen did a ton of walking, fast walking and then just a little riding in his stroller when his legs cramped.  He had so much fun! 

I almost forgot about the tiniest mouse of all.. sweet Bridgey.

It was a great Halloween.  We had our traditional chili/cornbread and celebrated Nana's birthday.  All the kids dumped their buckets and sorted through their candy afterwards.  We usually only keep a few little chocolate bars and get rid of the rest.  On to November.... :)