Weekend and Countdown to Stanford

Another weekend has come and gone. Happy Monday! We are on a 4 day countdown to Stanford. Where did the past 7 weeks go?? The "plan" is to stay at LPCH and start Owen on Milrinone therapy. Owen has been doing so great, wonderful really, that I don't know if they will keep him. I am packing to stay and will be pleasantly surprised if they send us home!

Meanwhile, we are busy living life and having fun!  This weekend was filled with dance pictures, relaxing at home, and swimming. 

On Friday Owen was in desperate need of a haircut.  I asked him if he wanted Daddy to cut it or go get it cut. He said.. "I'll go get it cut at Dolce.. I will only go to YOUR salon.. they give you a drink and shampoo your hair. That's the ONLY place I will go." Awesome. So I got to pay a small fortune for Owen to get a shampoo, cut, style and a soda.  It turned out to only be $20 total, with tip!  So not too shabby and he got a pretty good haircut!!

Carson went to a movie with his siblings on Friday evening, so the kids and I stayed home and rented Les Mis.  Owen only watched the first ten minutes, but woke up the next morning asking me to tie his hands together with his Spidey slap bracelet.  "I am your prisoner.."  Then proceeded to walk around the house singing.. "look down.. look down.. don't look me in the eyes".  

Saturday I purchased dance recital tickets and I can't recall what we did the rest of the day.  It must not have been too eventful. Sunday was a get it done kind of morning and I snuck out for a quick pedicure.  Then we had a little "goodbye" party for Owen at Gma and Gpas house.  Also, Uncle Rustyn was in town from San Fran, so we got to spend some time with him. 

The Easter Bunny brought Owen this motor boat for the pool and he loved it!!  He has independence in the water, and can run over the big kids and squirt them.  He was thrilled!!  Here he is chasing Connor down.

Girly cousins.  There are so many more kiddos missing, but my camera memory cards have gone missing (totally not accusing Owen).  I had to borrow a memory card and only got a couple shots.  I've said this before, but I love that my kids get to grow up with ALL their cousins.  On my side and Carson's, there is a gaggle of cousins and it's always a fun time!

After singing.. "for he's a Jolly old SUPERHERO"... we had some desert and came home in time for bed.  It's back to school and there are only 4 weeks of Jr High left!!!  EEEK!!!  Then I will officially have an 8th grader. 

Kam and I stayed up late Saturday night looking through her giant tub of school projects.  It was so fun to look back on her Kindergarten journals.. we laughed SO hard!! She wrote some funny stuff and her artwork was stellar!  I'm glad she saved all of her projects and report cards over the years. 

I'll have a lot of Kam posts coming up in May.  She has a ton of stuff going on for the end of school and the end of this dance season. It's about to get CRAZY!!  Then again, I may just be chilling in Palo Alto, and Daddy's going to get to do the crazy.  I figure things will work out as they are meant to... everything always falls into place and is as it should be.

Owen's First Eye Appointment

Owen had his first appointment with the pediatric Ophtamologist today.  Unfortunately, we all have horrible vision, so it's not a matter of if he will need glasses, but when.  He has been begging to go to the eye doctor so that he can get glasses.. he is SO excited!!  I figured it wasn't a bad idea to have his vision and eye health checked. 

I called early last week to get into Dr C.  He came highly recommended by many, so as expected, there was a three month wait list.  I may have dropped the word 'heart transplant' and they called back with an appointment for today!  Owen was so thrilled to finally have his chance to go to the eye doctor.  Seriously excited!  When I was making Owen's appointment, the receptionist asked if I had another child that was seen by Dr C.  Not that I knew of?  Then I told them Kam's information and she said..."oh.. Dr C did her eye surgery back in 2005."  Good to know.  I felt bad for not putting two and two together, but at least I know I had a good doctor correct her blocked tear ducts 8 years ago!

Fast forward to today.  Owen rocked his vision tests, he was such a big boy!  The assistant did a few basic tests with the glasses, colors, numbers, ect.  Then the PA came in and got his medical history.  She put the "Super Spidey dilating drops" in his eyes, which he thought was pretty cool.  Then he was mad because it stung and asked the PA "are you insane?"  It became the joke the rest of the appointment. 

Owen was taken back to the room and Dr C came in to do a full exam.  Owen had a rough time with the smaller letters, so there is a little nearsightedness going on.  He will most likely end up with glasses going into first grade, just like Kam, and just like me.  For now, he'll have to settle for these totally awesome roller shades for his dilated eyes.

He thinks they are pretty cool!  So, no glasses.  His eye health is great!!  Dr C said he could see his dilated vessels behind the eyes are affected from his low saturations and poor perfusion, but it isn't affecting his vision.  So yay for that and we'll go back in a year!! 

Busy Weekend.

We had a busy weekend filled with family and lots of dancing!  On Friday afternoon, I had my sister's littles over so she could take Gigi to her dance competition.  Liv and Owen played so nice together for most of the afternoon and Bridgit was happy as could be. These two are normally like oil and water, but today, they got along!  As soon as Daddy got home from work, I ran to the hair salon for a hair color touch up.

We had an early morning Saturday to kick start the girl's dance convention. They were both in the Jr group (this is JUST the Jr Group) and spent 8 hours dancing on Saturday.  My mom had a hotel room at the resort, so it broke up the day and we had room service delivered for lunch.  Owen went back and forth from the hotel room to the convention.  The girls tore through the mini bar and Owen had fun playing "office" at the hotel desk. We met my Dad and Carson for dinner and they took Owen home with them so I could get Kam back to the hotel and ready for her competition in the evening.  Saturday was crazy busy, but Kam rocked her competition and the girls did what they love... Dance!!

Kam and I made the 45 min drive home to sleep in our own beds and were back at the hotel for more conventions on Sunday. 

The girls danced most of the afternoon Sunday and we wrapped up the convention and headed home.  It was exhausting, but so worth it!

Sunday evening, we had a family party at my parent's house to celebrate Luke's birthday.  Here's my mom, Kel (sis-Luke's bio mom), Jen (Luke's adoptive mom), and Bridgit. 

It was organized chaos as the kids settled in to watch Wreck It Ralph in 3D.

My dad cooked ribs and brats on the grill... delish!

The kids jumped on the tramp.  Luke, Gigi, Lucy and Liv were CRAZY!!  They were full out wrestling and beating each other up, all while laughing so hard they could hardly breathe. 

Owen stayed on the outside of the tramp, and just cheered them on!! :)  Sometimes I wonder if he really feels bad and wants to get in there and have the same level of energy, or if he is thinking.. "those kids are nuts!!"

Jumping on the tramp gives you tramp hair.  Ha!!

My sister wanted a picture of all the kids.. "a nice picture."  They had ice cream, cupcakes, frizzy hair, and looked like a hot mess.  But I got a picture!  Owen was playing soccer and wouldn't stop for a picture and Kam was dancing in the yard somewhere.  This was the best I could do.  (Luke, Charlie, Gigi, Lucy, Liv). 

Oh.. there's Kam.. doing dishes or something responsible.  Maybe just staying far away from the chaos outside. It was so fun to spend some quality one on one time with my girl this weekend, sharing our love of dance.  I love watching her dance!

I was so glad to finally get to sleep last night.  This morning came way too quickly.  Owen and I spent the morning pulling weeds in the side yard and sweeping off the porches/patios.  We just finished Speech therapy and we may or may not get off the couch to run to Costco.  I need a new vacuum and my house needs a little TLC from the weekend of neglect.  Happy Monday!!

IVIG Done

We had a very successful IVIG this week and we are home. I didn't get a chance to update yesterday because Mr Owen was full of energy, so we were busy playing.  Owen was hilarious at the hospital and had us all laughing.  Each time I ran to the cafeteria, I came back to a volunteer or child life in his room.  Apparently, he waits until I leave, then pushes the nurse button and asks for a volunteer to come play with him. 

When the IV team arrived, I had a brave boy on my hands.  He likes to control the situation, so she showed her the vein in his wrist that she was allowed to use, he even showed her what angle he wanted the IV at.  He helped her tape up the board and was such a rockstar! 

By evening, he was drinking pudding from a straw, putting his blood pressure cuff on both legs at the same time, talking to docs, chatting up his nurses, and just being silly.  He definetly makes our hospital visits a fun experience!  We had a great treatment with zero complications and we are happy to have IVIG #10 done.  Now we have two weeks to prepare to go to Stanford.

This weekend is a busy one!  Kam has a dance convention and competition at a local resort, so my mom has a room and we have a full weekend planned.  While the girls are busy dancing all day, I will be found lounging by the pool and I'm sure we will do our fair share of watching the girls dance.  I will post a lot of pics and try to get some videos of the girls dancing.. they are really great!!

Things really couldn't be better right now.

IVIG Round 10

Can you believe it has been a month?! Owen is back for IVIG!! We arrived at 4pm and so far, so good. Owen has had multiple intensivists, cardio NP, and nurses asses him and give him tons of attention. Daddy and Sis even came up to his room and stayed around for a bit. Owen is now settled into some Spongebob (no comment) and he's drinking pudding from a straw. He is talking to everyone that will listen and he is happy as punch.

The IV team is really backed up tonight, so it's 7pm and we are still waiting for an IV.  Hoping things get rolling by 10pm so we can get to bed at a decent hour.  This mama is tired!

Before we arrived at the hospital, we picked up Sis from school.  This week is AIMS testing, and while most kids dread state testing, Kam loves it.  She also had to do a biography project and she chose Lucille Ball.  We had to run to the library to pick out a book and my kids were in Awe.  "All of these books.. for free??  You still have to pay for the card though right?"  Oh my.. I am far from a reader, in fact, I can't remember the last book I read.  I guess I am failing my kids as they haven't stepped foot in a library since Owen was born.  My kids are big readers, so I don't know why I didn't think of them loving the library.  I suspect we'll be regular visitors now. :)

These crazy kids played in the hospital room for a good hour before we finally hooked Owen up to his leads.  It's going to be another long night.  The best news of the day is that Owen has gained a significant amount of weight this past month.  Last month, he weighed in at 37.8, today he was 39.5!!  That is huge!!!  So happy.  I'm sure his team at Stanford will be pleased in two weeks.  Yes.. two weeks until we head to Stanford.  Hoping for a smooth infusion tonight.

Organ Donation and Advocacy

Just a brief update.. thank you for all your kind words, prayers, and emails. I appreciate it!! Owen is doing better than he was the other day. He had a lazy day again yesterday, but spent the evening with his Sis and Gigi at my parents house. He played on the trampoline, in the mud and had lots of giggles. One day at a time.

It is almost halfway through April and it is Organ Donation month!!   Owen has been on the transplant list for (almost) 8 months, waiting for his new chance at life.  We have been so fortunate that he has been stable enough to wait at home, knowing that many of our heart friends are fighting for their lives in an ICU.  We have lost friends, recently, who have run out of time while waiting.  It is so unfair that for our son to live, another family will lose their child.  But in that moment, the most horrible moment that those parents will ever experience, I pray that they will choose organ donation.

Organ donation is not always pretty.  It comes at a time of tragedy and loss.  Instead of holding your loved one as they pass away, you are signing papers and kissing them as they are wheeled to an OR.  It is truly a selfless act of giving as a single donor can save up to 8 lives and countless more with tissue donation.  Owen may only receive a heart, but 7 other children are also given the gift of life!!  I can't think of another way to leave me legacy in this world than to pass on life to another.

Last night, Carson and I had the opportunity to attend a forum at Phoenix Children's hospital.  It's no secret that we have had our issues with care locally, which is the main reason we spend thousands of dollars to travel 900 miles away to get our Son the care he needs.  We sat in a board room with executives and co-directors of PCH and were able to share our stories with them.  We had the opportunity to offer ideas for improvement.  We are given the opportunity to apply to sit on the Family Advisory Council designated specifically for the CVICU and heart center.  We are making a change and it feels good. 

The amazing women that I have had the opportunity to meet in the last five years has been the biggest blessing of all.  Last night, we sat together, collectively and shed tears for one another.  The stories heartbreaking.  I pray that we softened the hearts of those executives and doctors and that moving forward, a difference will be made.  That because of our advocacy, we will make a difference in the lives of many.  I am proud to call these women my friends!! 

Now I am tearing up and Owen thinks I'm crazy crying at the computer.  :)  Thanks for reading and always being so supportive. 

Hoping for Answers

For the past 2 1/2 weeks, Owen has felt great.  He wants to swim, play, get outside and have fun.  This was a huge improvement over his less than stellar February, while recovering from RSV.  You may remember that we went to Stanford on March 14th and we had a long discussion about when to admit Owen and start him on Milrinone IV therapy.  We scheduled to go back to Stanford on May 3rd for admit.

That visit was followed up with 18 days of wonderful!!  I spoke with our NP at Stanford on Friday and she told me that due to his declining health, they have removed the antibody void {A1.. found in 24% of the population} on the UNOS database.  So that will open up the donor pool for Owen.  I don't really know how much it will help since he has a less common blood type of B+.  But at least, that's one less restriction when a donor heart becomes available.

I let our transplant team know how great he has been doing.  More energy, getting stronger, tolerating increased calories, ect.... and that we would leave the Milrinone therapy option open on May 3rd.  May not be a done deal if he is doing great. 

I just got our airline tickets booked, hotel reservations made, and found a smokin deal on a rental car.  I am ready to see what this visit brings. 

Then today, out of the blue, Owen is feeling tired again.  It could just be a fluke, but he is back to his baseline.  Sitting around, not playing, not wanting to go outside, ect.  Such a bummer, but I hope he is just having a down day and that we'll see his wilder side again soon. 

It is such a roller coaster and I know I over-analyze every little move he makes.  I feel the pressure of not missing a thing, I can't let him decline and not notice or act upon it. 

Please continue to pray and send good thoughts our way as the next three weeks will pass quickly before we find ourselves back in Palo Alto.  I don't know what the future holds.. hopefully a new, healthy heart for O. Man. 

In the meantime, we continue to enjoy our time at home.  We had a big family party this weekend, a great few days of therapies, and now we have a pretty chill week ahead.  I am still waiting for that big sign that tell me 'THIS IS RIGHT!!'  Do I stay in Palo Alto and do we start Milrinone therapy?  Or do we come home and continue to wait and enjoy life? 

And just for fun.. I found this video the other day and love it so much.  Owen was about 2 1/2 when I took this video.  He has come so far!!!
Untitled from Andrea Simmons on Vimeo.

Tony Stark aka Owen

It's Saturday!! I'm spending my Saturday morning with Tony Stark and chowing down on beef jerky.

We'll venture out to the pool in just a bit to spend a few hours poolside. Then out to dinner with friends this evening. Happy Saturday!!

Owen's Progress

Owen's energy has been great lately and he's been doing really well.  Waking up at 6am, ready to get a move on his day.  This morning, he woke me up at 6, so I decided to do a Jillian DVD.  He was saying "Kam.. come check mommy exercise.. it's HILARIOUS!!"  Then I looked behind me to see a little blue eyed boy doing situps.  He had little weights in his hands (the ends off an old shower curtain rod) and then joined me in doing burpees.  Who needs PT when you have Jillian Michaels? 

He had another great session at gymnastics yesterday and did a lot of stepping up and down the mats.  His legs are really weak, so it was great to see him working so hard, even if his quads were trembling.  Last night I continued some work on the exercise ball with him. He would roll over the ball on his tummy and do little push up walks off the ball.  Then he stood up and his hands/face were purple.  We only did a few and I had to call it quits.

This morning, his OT came by and he did a phenomenol job writing his name, numbers and letters.  Then we decided to work on his art skills.  Kam used to spend hours doing artwork and it was so great!!  I saved it all in big binders, that I shared with his OT today.  Owen doesn't like drawing and so today we decided to work on it.  You may think those pictures on the left are Owen's, but nope... they are mine!!  Carnage on the left, Venom in the middle, courtesy of me. :)  I have not an art bone in my body!!  The picture on the right is Owen's Spiderman. I think he did a good job for him.  He has progressed nicely from his occassional scribble he used to do. 

So proud of Owen and how far he is coming along developmentally. I'm still trying to come up with a game plan for Kindergarten in the fall. Obviously, sending him to a regular classroom come August won't be an option, but I really want to have a plan in place. Homeschooling, mixed with a tutor from the school district would be ideal until he is able to attend. Thanks for reading.. can't believe it's almost the weekend!