Superheros

Someone is totally excited for the Avenger movie to come out next weekend!  Owen knows every Superhero, their enemies and you will never see him without a "bad/good guy" in his hand.  He is, hands down, the biggest Superhero fanatic I have ever met. 

His imagination is intense and brilliant when he has his toys.  They destroy my family room as they fight on the race tracks, destroy the train set, and they have battles in the bucket of Legos. 

This sweet little guy loves them all!  Spiderman, Hulk, Ironman, Batman, Thor, Captain America, Venom, Doc Ock, Abomination, Green Goblin.. he has a special love for them all.  He even knows how they got their powers.  He'll tell you how the symbiote creates Venom, the Gamma Radiation created the Hulk, how Spiderman was bit by a radioactive spider, and how Ironman is a billionaire.

Since Owen hadn't seen the Incredible Hulk movie yet, we rented it for him on Amazon streaming today.  He went absolutely insane for the scene where the Hulk defeats the Abomination!!  He looked at me with the widest eyes and said "You didn't tell me the Abomination was in this movie!!!"  He was so thrilled!  We had to rewind and replay the scene several times and I couldn't help but smile at how excited he was.

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He is counting down the days until the new Avenger movie hits the big screen next weekend.  I'm sure we'll see it several times!  Then the newest Spiderman comes out July 3rd, that will be another huge hit for Owen!  I love out Superhero/Villain loving boy so much. 

Toilet Paper Ninja

As I was getting ready this morning, Owen was bugging Kamryn in the kids' bathroom. I guess she made the most of it by turning her brother into the Toilet Paper Ninja! He was so tickled and asked me to get the camera!!   He showed me his most awesome ninja moves!  Kam and I were laughing so hard!!

It doesn't get any better than this!!! Love you Ninja Man!!

GI Appointment

I got up early this morning, by 6am and it felt great. I got breakfast prepared, dishes done, and we were ready for school with time to spare. Owen had an appointment with Dr M. for GI this morning, but Dr M called and said he was sick. He was in the office for just the morning and wanted to know how Owen was doing. I told him about the puking that has returned with a vengeance. Owen has been burping a ton and always complains about his "sick tummy". I feel so awful for him. He hasn't wanted to be fed because it makes him feel crummy and when I push his calories, he pukes. It's just an ugly cycle. We agreed we would keep our appointment time, but just not have an 'actual' appointment.

My calm morning turned crazy when Owen puked twice while I was talking to Dr M. on the phone. That's when I stopped to look at the fridge and saw this... it seriously made me smile so big!!

We dropped off Kam at school and headed to the doctor's office.  Owen had a weight check since he hasn't tolerated even close to his calorie goal since his cath.  The fantastic news is that he has continued to GAIN weight and is at 34.5lbs.  He doesn't look puffy, so I'm thinking it's muscle, or "real" weight, not fluid retention.  We talked to Dr M. from his office, across the room, and he even wore a mask to keep Owen away from germs.   Owen is still in the 25% for growth.  We decided to go ahead and do a tummy xray to rule everything out.  I'm waiting to hear back on those results. 

We received our itinerary from Stanford.  I'm really curious about the Pyschosocial Eval.  He's never had one and I have no idea what that is.  I'm picturing ink splat pictures and Owen telling them he sees evil villains being defeated by his superhero powers with big giant swords.  I'm sure his imagination will be 10x magnified after seeing the new Avenger movie!! :)

Today is Kam's last day of school for the week and we are excited to get in the pool for the first time this year!!  I'm off to find a rental car for our trip, secure a portable oxygen concentrator and double check the insurance authorizations.  Happy Tuesday!!

Weekend Wrap Up

The Suns game kick started our weekend of fun.  Friday night, we were so excited to have my family over to celebrate Luke's 5th birthday!  We hadn't seen him in a year and couldn't wait.  We had lots of salad, pizza, wings, and cupcakes.  It was loud as the cousins ran around finding every one of Owen's weapons to play with.  It wasn't until I was picking up after the party, when I realized we have every lightsaber, sword, nerf gun and weapon out there.  It's always fun catching up with the S. family and are so grateful for letting my Sis and our fam be a part of Luke's life.  Adoption can be so wonderful!! 

We went outside so I could get a few pictures.  Ha.  Livvy ran off to the park, followed by Kam trying to catch her, followed by Gigi cartwheeling down the hill, followed by Luke trying to catch up.  Owen just stood at the doorway laughing hysterically!!  Kam's loves to "photo bomb" my pictures by jumping in and being silly.  I actually kinda love it because most girls don't even want their picture taken. 

I finally got a picture of Kelli with Liv, Luke and Gigi.  The calm lasted for a whole five seconds before the kids were off and running around again.  It was a fantastic night and we can't wait to see Mr. Luke soon!!!  Owen and Luke have a lot of similarities.. only Owen takes after Carson and Luke looks just like my Dad.

On Saturday, we had a family party at G &G Simmons' house.  The triple digit weather didn't keep the kids indoors and we had a really good time.  While the adults were inside hanging out, I was outside monitoring Owen so he didn't jump in the pool.  Connor fell through and got stuck in the chair.

Kam is joining Connor at Jr High in the fall and I assumed they were talking "cool" things.. turns out they were talking about Naruto and video games.  I love the "nerds" in them. 

Meanwhile.. Owen wrestled everyone that would let him.  Rylee, Em, Luke and Tate let him wrestle and beat them up for a while. Owen LOVES to wrestle!

The girls.. they are growing up SO so fast!!  It seems like they were just playing dress up and playing make believe.

And for proof that I do exist... a picture taken from my first born.

It was a long, fun weekend and we had a great time!!  Sunday we spent a few hours with Uncle Rustyn, who is in town from San Fran.  Grandma K. was also around so we had another fun day. 

So far, our week has started out relaxing!!  Owen and I are getting ready to go grocery shopping for the week.  I'm pretty good about creating a weekly menu and only going to the store once a week.  Kam only has two days of school this week, so we have some fun planned!!   Thanks for reading. :)

Phoenix Suns Game

I finally had time to sit down this afternoon and rid my laptop of a few viruses, or trojans, or whatever they are identified as.  I couldn't get access to blogger, and google would redirect to spam sights.  It has been a long week of not being able to access certain areas of my blogger account, and I couldn't leave comments.  I think I fixed the issues for good!!  Yay for my two year career at Godaddy for teaching me a few things.  This week I'll be working on a complete makeover to my blog.  If you come by and see things out of sorts, you'll know why.

AIMS testing was over on Thursday and Kam is glad it's over with!  She only has about 4 weeks of school left with lots of concerts, field trips, award ceremonies, and getting ready for Junior High stuff!  Throw in a bunch of dance recital, and performances coming up in the next month and we are gonna be busy.  Just the way I like it!

On Thursday night, the girls danced at the Phoenix Suns halftime show and rocked it!!  There was a mix up in the group ordering of tickets, so the awesome director at the Suns game upgraded my fam to handicapped accessible seats in a great area!  Owen had never been to a Suns game and he LOVED every second of it.  He was screaming and throwing his hands, cheering on the "white guys" (the Suns were wearing their white jerseys).

The time out entertainment included the Golden Grannies, who were fantastic and entertaining!  I told Kam she would make a great Suns dancer one day, until I saw their moves and then told her I'd rather she be a doctor.  The Suns Gorilla was in attendance, as well as the Avengers for promotional business, and Owen went nuts again for his favorite Superheros. 

The game started at 7:30, so it was a late night for us.

Kam and Daddy getting ready for the game to start! 

Kam and Owen were snacking on popcorn.  Kamryn would throw it in the air and catch it in her mouth and Owen went into hysterics laughing so hard!!  That was the best pre game entertainment we could have asked for.

At the beginning of the second quarter, we dropped the girls off with their teachers and went back to our seats.  Here's Kam dancing.. I put an arrow on the picture because she's near impossible to find otherwise.

Kam and Gigi danced perfectly!!   I'm so excited to see their new hip hop, ballet and Jazz routines!  Then they will have team/company auditions for next year.  I love that they are so active and enjoy dance so much. 

I think both girls ditched school on Friday since they were dead tired getting home past 11pm.  Kam's teacher was doing a movie marathon on Friday, so I figured she wasn't missing much.   I'll have a bunch of dance pictures coming up in the next month.  I am so excited to see all their new costumes!!!

Transplant Clinic Coming Up

I got word from the scheduler at Stanford and we have an itinerary for May 29th.  Owen will undergo nine hours of transplant testing, as well as Carson and myself.  Starting at 8am, Owen will undergo echo, ekg, and then move to the lab to draw his PRAs (panel reactive antibodies).  Then we meet with child psych, social workers, lunch break, nutritionists, and then cardio clinic with Dr B.  We've always seen Dr Rosenthal, but he won't be in that week and I have heard amazing things about Dr B.  I noticed he was listed in the top 1% of pediatric cardios in a recent publication, and he is the head of the heart failure clinic at LPCH.  He works alongside Dr Rosenthal and has been fully updated on Owen's case and will have another meeting prior to our visit.  I am a little excited to get a fresh set of eyes on him and I am anxious to pick his brain.

 It seems unreal that three years ago, in May, we were having the same testing and consultations.  I wrote a post here about his "plan" at the time and it's not too far off from where we are today.  Most days I feel like Owen is a normal 4 year old and forget that he is sick.  The medicine, oxygen, therapies.. all of it is so normal.  Then I erase my tunnel vision and compare him to other 4 yr olds with HLHS, and the reality is that he is really sick.  I don't even try to compare him to healthy 4 yr olds because there is no comparison. 

I want to make the right decisions and do what's best for Owen long term, without compromising his quality of life.  I am going to go into this visit with an open mind and heart.  I will be the first to admit that I challenge every decision that is made and second guess.  I do trust all of Owen's medical team, but I also know that they are human.  I hope to come home from this visit feeling confident in the decision that we make moving forward. 

I still fully intend on obtaining a second and third opinion on Owen's case from two other top cardiac centers in the nation.  I am sure I will hear the same answers that I get at Stanford and that is what I am absolutely hoping for!

Thanks for all your prayers.  I have a feeling that this year is going to be a busy one!! 

PS.. Owen hasn't been in his stroller in a couple weeks!  He's walking everywhere and I just carry his oxygen like a baby in my arms.  He says "I am getting so strong.. I am a STRONG boy!!"  He has no idea how strong he is!!

Gtube and AIMS

Since it had been a full year since we visited Owen's Gtube surgeon, I thought it was time for a visit! Owen has had the same size Mickey button since he was 20 months old, so before I went through the trauma of changing it, I wanted to make sure he didn't require a bigger size.

We had to drive downtown to PCH for the button change, per new policy we couldn't do the button change in the East Valley office, which is much closer to us. So after waiting for over an hour to see the doctor, we discovered that the current button size was still fine. After she replaced the tube with the button I brought with me, we were on our way after just a five minute consult.  We also were advised by Dr G that we absolutely can do all our button stuff in the East Valley and that we were given misinformation. Awesome. Have I mentioned how much I love our local children's hospital. {Insert sarcasm here}

After picking up Sis and running a couple errands, I came home at 4:05 to a message from the scheduler at Stanford. I called back, but they had just closed. Sigh. I'll call tomorrow to set all our dates, call insurance to work out the details and then book our next trip.

Kam is on the six week countdown until school is out! This week is AIMS testing and today was the writing portion of it. She always scores way above average on all her AIMS tests, so I have little to worry about there. She said the writing prompt of the day was..."Imagine you're locked in the grocery store overnight.. what do you do and why?" I know which aisle I would raid!!!

Time for dinner and my bed is looking mighty fine.

Until tomorrow...

Transplant Conference Discussions

Owen was a star at Gymnastics this morning.  He took only a couple mini breaks and worked harder than ever.  Each week, Owen's therapist has students that come to observe and to gain more hours.  Owen is mister social and just loves meeting all these new people.  This morning there were "two womens" there to play with him.  He loved pushing them into the foam pit, having them bounce him on the trampoline (think don't crack the egg), and we played hide and seek.  It was such a fun morning and I, along with his physical therapist, am in awe of how much improvement he has made over the past year! 

I came home to a message from Owen's NP at Stanford.  I tried to call back to no avail, but they know me and ended up calling me back in 10 minutes.  Owen was discussed in length at their transplant conference this morning.  The overall consensus from the transplant cardiologists, as well as the surgical team was that we need to seriously consider transplant for Owen. 

The last time he had an official "transplant evaluation" was three years ago when he was just a little over 14 months old.  Since then, his medication has tripled, and quadrupled in some cases.  His oxygen has increased from 1/4 liter to 3 liters on some days.  They want to get the ball rolling and just be ready to list him at any time.

They want to see him in the "sooner rather than later future".  We are working for the last week of May, the days following Memorial weekend, or the second week of June.  Much sooner than I ever anticipated.

We will have appointments with the child psych team, transplant nutritionist, social worker, transplant training and the of course, PRA labs.  Owen's antibodies are extremely sensitized, so I'm hoping that over the past three years they have dropped considerably.

They know that I still have a million questions regarding further surgical options before looking towards transplant and all of those concerns will be addressed as well.  We also know the timing of Owen needing to be listed.  It's such a fine line to know when to list. 

Owen will need antibody treatments before transplants to lower his antibodies.  They use a series of IVIG treatments and in the first month, they do three aggressive treatments over a four week period.  I would have to relocate for that time to get those treatments done.  They have never worked with PCH (Phoenix Childrens) on pre transplant kiddos like Owen before.  They have been his primary cardio team for the past three years, so they want control over what's going on, and they know that I prefer them to be in control.  We absolutely adore our cardio in AZ, but he ultimately does what Stanford tells him to do, and he is fully supportive. 

We have to discuss with our insurance companies the option of life flight so we can stay in AZ while we wait for a heart.  Stanford has only let one other kid wait at home (more than 3 hours from the hospital) as a status 2 and that was Owen's buddy Chase.  We also need to fine tune post transplant care options, as well as perhaps having the monthly IVIG treatments done in Phx, rather than traveling to Stanford monthly while he waits for a heart.

After all is said and done, the conversation ended with the Fontan is still not ruled out.  We just want to look at a full timeline of the past three years, look at Owen's patterns and then look at the next year to three down the road.  We need to look at all possible outcomes and that is what I LOVE about our team at Stanford.  They are always looking ahead and want to be as prepared as possible. 

We may not list him immediately.  His heart function is better than ever for him, and his sats are better than they have been in years!  His energy levels are getting better and he's tolerating larger volumes of food.  His growth is in the 25% and his developmental delays are improving. 

  We will have a big visit coming up and we have so much to discuss.  It will be good to clear my mind of the million questions and concerns I have.  We are just so grateful for how well he is doing today.  I should hear back next week on the exact dates so I can get everything planned.  They have a lot to coordinate before our visit.

Whoa.. that's a lot to digest.

Dentist Check Ups

Both kids had their six month dental cleanings and xrays this morning. Owen has accompanied Kam to her visits for the past three years. Every six months, the dentist has Owen sit in the chair until he gets a little more comfortable with the process.  In October, Owen had his xrays done on the front teeth and other than a little trauma to his front teeth, his teeth looked great.

I always get a little nervous when taking both my kids because I remember having a billion cavities filled as a kid. I call it bad genetics. Kam takes after Carson and has yet to have a cavity. This visit was no different and she did fantastic! All her baby teeth are gone and we just need all the permanent teeth to pop in.

We started Owen off with a dose of antibiotics an hour before his visit. We attempted to do xrays, but those darn bitewings for the back teeth were too big for his little mouth. We tried different angles and nothing worked. He was so cooperative and sweet with the tech. He layed back on the surfboard and let his dentist use the little "spoon" scrapper and poke around his teeth. There are no sticky spots and it appears there are no cavities to be seen. His little chompers look fantastic!! What a huge blessing!!

On the downside, he does have some tarter buildup on the back of the very back molars. The tech started by scraping the back right tooth to get it off and as soon as Owen saw the blood, he was SO done! He cried, jumped up and said "No more!"

We are going to go back in a month and see if we can get the others done. Then maybe go on a weekly basis until we can get a full cleaning done. I'm not too concerned at this point, but I would like him to have a good flouride treatment and cleaning. We'll just take it at Owen's pace because I want him to continue to enjoy going to the dentist with no fear.

All is well. No cavities!!

Easter Sunday

We had a wonderful Easter this year!  We kick started the festivities by coloring Easter eggs on Saturday night.  I always look forward to coloring eggs.  This year I bought the little cups that come with the dye, hoping that it would be a little neater. 

Kamryn drew art on the eggs with the white crayon before soaking them in the dye.  She drew a cat on this one, the Nyan cat (from the app), and Manga on the last one. 

Owen wanted a green monster egg, so that is what he got! 

It was a little messy, but a whole lotta fun!!  We dyed almost the entire carton of eggs this year.  On Easter morning, I peeled them and made a big batch of deviled eggs to take to Nanas.. yummy!

The kids set their Easter baskets out with some carrots for the Easter bunny and we crashed early.  On Easter morning, the bunny left a note leading them on a scavenger hunt around the house to find their baskets.  Kam got a bag of Dove eggs, a Reeses carrot and clothes.  Notice her sock bun.. you'll see her cute sock bun curls later. 

Owen was so excited to get Superhero squinkies, Star Wars fighting pods (aka squinkies), M&Ms and a reeses carrot.  Thank you Easter bunny... you are so sweet!!!

   We had reservation for brunch at a local hotel with my family.  I love these three!!  Notice Kam's cute sock bun curls.. love that method!

Gigi was all dressed up in her Easter hat and ruffly dress looking beautiful and Kam is just gorgeous as always.

Owen loved this fountain and it kept him entertained while we waited for our table.  Take note of the Spiderman flip flops that he insisted on wearing.  He can make anything look cute.

Kam is such a Daddy's girl!

Gigi is the most social little girl and was playing with some new friends she had just made.  They were letting Owen be the monster and scare them as they ran around.  He thought this was Hilarious!! 

Me and my babies. 

The food was so yummy at the buffet.  Who doesn't love all you can eat crab and prime rib!  They also had waffles, omelets and a billion other things to choose from.  We were stuffed!  Liv and Gigi.. love my neices.

Owen with Grandma and Grandpa... Owen thought it was funny to steal my Dad's seat when he got up for more food. :)

After our yummy brunch, we came home and crashed for a few hours.  We talked to the kids about the real meaning behind Easter.  Then I made a big pan of potatoes and devilled eggs to take to Nana's house.  Nana's Alzheimers is progressing and sometimes she gets confused about who belongs with whom.  Like when she asked Carson if he was married to my mom.  When he said.. "no Grandma.. I'm married to Andrea.." she said.. "OH.. that's right.. who's Andrea again?"  Then it clicked. :)  Nana's good friend was there as well and Owen liked that she had oxygen just like him.  There is never a dull moment around my family get togethers!

Owen and Livvy were so excited to swing.

Kamryn was a huge help and cut all the strawberries for my Sister's strawberry shortcake.  She helps whenever she is needed and played with the little ones while we finished cooking. She is seriously the most amazing girl!!

Chris hid a bunch of Easter eggs in the front and backyard for the kids to hunt.  It was a lot of fun and I'm pretty sure Livv and Owen made out like bandits.  Gigi and Kam were super helpful in letting them find the eggs.

When the kids started running out of eggs to hunt, we just snuck them out of their baskets and re hid them.  They had no idea we were recycling eggs and they had fun continuing their hunt.

After dinner and lots of fun conversations, Easter was over.  We drove home, took our baths and crashed.  Easter is one of my favorite holidays for so many reasons.  I am a little sad it's over, but bring on Mother's Day!!! :)

Play

Owen asks me a million times a day if it's time to pick up Bo. "Bo" is his nickname for Kam. From the minute we drop her off, he asks for his "goodbye kiss" and starts the countdown until we pick her up. He just loves her so much!! I know the love goes two ways and she misses him just as much.

Some days they both go straight upstairs and lay in her bed while listening to her iPod. Some days, like yesterday, Owen really wanted her to play. She had a bunch of homework, but still took 30 minutes to have a snack with him and play!

I play with Owen all day... whatever he wants to do.  He has play dates with other guys his age.  We run errands and try to keep busy.  We play at the park everyday and he has a couple girlfriends that play with him there.  Nothing, and I mean nothing, beat his time playing with Sis!!!  He gets so excited and happy!! 

Then he gets silly and starts to wrestle her.  He wrestles everyone, but there is something about the way Kam plays the victim and lets him beat her up that makes it a little more fun.  The rest of us put  up a fight and a challenge.

These two kiddos are the best thing that ever happened to us!! They are the best kids!

After 30 minutes of wrestling, Owen was blue, and Kam was ready to retire to her room to relax before starting homework.  Owen and I sat on the couch and watched all the crazy videos I had stored on my hard drive of the kids.  I laughed so hard at their antics!! 

I couldn't be more proud to be their Mommy!  I can't imagine life can get much better than this!