Summer Days

Our first week of summer break has been good to us. We spent Tuesday and Wednesday working hard.  The house needed a good deep cleaning, so Tuesday was spent. I tore everything out of the garage yesterday, swept, sprayed for bugs and put things back super organized.  It was hard work for one person, but so glad it's done.  We went to lunch with our good friends, followed by a little Sonic Happy Hour in the afternoon. 

Today was a fun day at the water park.  There are a few great water parks around us and for $5, all four of us got in for a morning of fun.  Cousins and friends showed up to play and we had a great time.  Owen went from the giant bucket that dumps water, to playing on the playground in the water, then to the lazy river and back again.  No wonder I'm exhausted lugging around all 39lbs of Owen and his oxygen tank under my other arm.   We grabbed lunch on the way home and now it's relaxing time.

My favorite part of swimming and playing in the sun, is the cozy afternoons that follow. 

I got a call from Owen's transplant team at Stanford.  They were checking in and giving me the results of his last IVIG labs.  ZERO!!!  Amazing and wonderful!! He is responding so well to the IVIG infusions.  Since his antibodies remain at zero, that means he will continue to have no voids on UNOS.  I'm hoping once we bump him to 1A status, he'll get a heart quickly.  We discussed the plan for June 11th, but still don't really have a plan.  I am learning to go with the flow and that is SO hard for me.  The Ronald McDonald House won't know if there is a room available until 24 hours in advance, and there is NEVER a room available.  I have a hotel reserved as backup for a few days.  We won't know if there is a bed available in the Cardiac ICU until the day we fly in.  So basically, I need to just let go of any kind of control and just go along for the ride. 

Life is good.  We have dance dress rehearsals and dance recitals for HOURS over the next couple days.  Follow that up with family parties, Sunsplash waterpark day, and Liv's bday party.  We are crazy busy and it's all fun!!  I wouldn't have it any other way.  Summer is here!!! :)

Memorial Weekend Fun

We had the best three day weekend. Lots of swimming, time with family and memories were made. My bff from high school came over on Sunday (and I didn't get a single picture), but it was so great to see Ami and Ashley. My sister and her fam came over and Uncle Rustyn came over too.  The weather was perfectly warm and it was a little overcast, the perfect day for swimming.

Bridgit is the sweetest baby.  Love her and I'm gonna miss her while we're in Palo Alto.

Gigi monster being Gigi.

Kam and Liv being goofballs.  Liv loves her "bobo".

My baby girl and me with Bridg... loving the raccoon eyes.

Uncle Rustyn and Owen chillin in the hot pool.  We sent Chris to Sonic happy hour to get drinks for the crew and we stayed poolside for hours!  It was the best day.

On Memorial Day, we headed to Grandpa Monica's (as Owen calls Gpa and Gmas).   The kids had another big dose of pool time and Vitamin D.  Owen loved when everyone jumped off the diving rock into the deep end and would soak him!

Cousin love.  Connor looks thrilled here... ha.

Owen froze in the water and came in for a quick shower before changing.  Here he is with his favorite Cousin!

Everyone followed suit and we played Twister for a whole three minutes.

Daddy addicted to Candy Crush Saga... sorry babe. :)

The kids played Mexican Train Game, although Owen wasn't too thrilled to learn that Dominos are not just for stacking and destroying.

Love these nieces and nephews so much.  Best group of cousins ever and we are going to miss them so so much.  He better get a heart soon so we can come back home to the desert and to all these cute faces.

It was a great weekend. Now it's time to start our week and we have a huge list of things to get done before we leave. Starting with a deep cleaning today.

Bday Party Fun

Owen was very excited for "his" birthday party this weekend. It obviously wasn't HIS birthday, but he was so excited to get his very own invitation to Em and Zoe's Bday party.  He doesn't get out much and has never, never played around kids his age in a setting like this.  He was SO thrilled!!!  This was a fun place called Imagination Avenue and I am looking for something similar in northern Cali to take Owen to.. he loved it so much!  There were little playhouses.. grocery store, home depot, hospital, dress up center, space center, farmers market, ect.  There was a road that went around with all these cars to climb and play in. 

Owen made friends with D. D's mom and I are good friends and he had his transplant when he was a baby.  At one point, "firefighter boy" as Owen called him, came up to Owen and asked what the round stickers on his cheeks were for.  Owen says.. "Oh, I need a transplant, so.."  Then "firefighter boy" says "Oh, I've already done that."  Like it's so normal.. I already had a transplant y'all.  :) 

After a nibble of pizza and not even a lick of frosting off his cupcake, we were back to playing.  I brought the long oxygen tubing so Owen would be free to play.. Zoe didn't think it was such a brilliant idea.   She just wanted to get into her police car and shut the door.. but the tubing was tangled everywhere.  Birthday girl was not amused.

Owen said goodbye and Happy Birthday to the party girls and we were off to pick up his goodie bag.  I think the Lihn's set the bar high for Owen's future of birthday parties. 

As we were driving home Owen says.. "are we almost home yet."  We weren't even close and so I peeked back and he had wrapped the balloon string all around his arm and couldn't get it off.  Goofball.  He came home, dumped out his goodie bag and we heard stories of "HIS" party.  I have a feeling his sixth birthday party is going to have to be a good one!! :)

Golden Scholar and School's OUT!!!

This may be a bit of a brag post because we are so proud of Kam!  Another year has gone by and she has rocked it!  Today was the last day of 7th grade.  At the first of the year, Kam was so nervous about going to a new school where she didn't know anyone as it wasn't the Junior High her Elementary feeds into.  She made great friends from day one and has become really outgoing.  My favorite part of the day (and Owen's too!) is picking her up after school and hearing every single detail about her day. 

Today was the Golden Scholar award ceremony recognizing the students that have held a 3.8GPA or higher throughout the year.  Kam far exceeded that, ending the year with a 4.4GPA!!!  She has 4 honors classes this year and she will add one more to her 8th grade schedule.  I am seriously so proud!!!  This past weekend I asked her if she was planning on studying for finals and she looked at me like I was crazy... "I don't have to study mom, they are easy."  Of course they are.  She was right and just about aced them all.  I always tell her how talented she is because I don't want her to ever forget this gift she has been given.  We love you so much Sis and we are proud of you!!

This wasn't the first year she was awarded Golden Scholar.  She has made this high honor each year since 4th grade, when you are first eligible.  In fact, she has only ever had one B+ ever and the rest have been A's.  Told you I was going to brag a bit... but she deserves it! 

Fourth Grade.

Fifth Grade.
Sixth Grade.

We are not as sad as Kam that school is over for the summer.  She will miss her friend and the fun that comes along with Junior High, but we are glad she is home!!  For the next two weeks, we will sleep in, eat breakfast as slow as we want, lounge around in our pjs and swim.  Dance will take priority .. and there is a lot of dance coming up!  Then we will prepare to spend our summer in Palo Alto. 

 

So long 7th grade.. you have been good to our girl!



4 O'Clock

This is the last week of school.  Kam will say goodbye to 7th grade and just like that, middle school is half over. Kam had finals today and tomorrow, then she is done.  The temps are warming up, the days are longer, and our 4 o'clock looks like this.  Owen takes a short afternoon nap on the couch, Kam eats an afternoon snack, and I catch up on my emails. 

Kam sprained her ankle last night getting out of bed. She is such a great dancer and never gets injured at dance, but she is so clumsy at home and is always hurting herself.  Nothing a little ice and compression bandage won't fix in a few days.  She's tough.

We rarely turn the TV on around here, so if it weren't for Facebook, I wouldn't have known about all the tornadoes and devastation in Oklahoma. I have been watching CNN online today getting updates.. it's heartbreaking.   Our thoughts and prayers go out to all of you and your loved ones from that area.

Dance Recital Pics

All the girls had dance recital pictures today!!  So fun!  The girls are getting ready for their marathon day of recitals on the 1st.  There will be three recital shows and Kam has 7 costume changes in the afternoon show.. it's gonna be crazy.  All four of the girls are dancing and performing this year and we can't wait.

Lucy is doing a tap dance to 'Stupid Cupid', Liv is shaking it to "Sugar Pie Honey Bunch", Gigi's costume is her Hip Hop remix to 'Beauty and the Beat' and Kam has a tribal Hip Hop dance with the teen boys.  I promise to post the videos this year!!

Owen wanted in on all the recital fun... I love this picture so much!!! He loves being the only boy cousin and can't get enough of the attention from all the girl dancers.  He loves to go to dance competitions and recitals and sit right in the front row!  He's their biggest fan yelling their names on stage.. "GO BOBO!!  GO GIGI!!  GO LUCY!!  GO LIVVY!!"  I can hear it now.

After our first set of pictures, we ran home to change into ballet costumes.  The lighting wasn't so good as it was getting dark, but you can see their super cute costumes.

We were sitting at a stop light and the sun was setting behind me.  Kam's eyes were so pretty... I love this girl so much.  I couldn't have hand picked a better daughter.

It was a long evening and tomorrow we have another performance at a college half time show.  So off to bed we go!

June 11th.

I finally settled on a date... June 11th. Owen and I will fly to Stanford and begin our next journey in the transplant process.  The plan is to fly up in the morning and be admitted to the CICU later in the day.  He will also be bumped up on the transplant list from status 2 (at home and stable on oral meds) to status 1A (top priority).  For a few days, this will be our home away from home.

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Owen will have a PICC line placed, which is more permanent than a peripheral IV.  This will stay in place until he receives a heart.  His Milrinone will be given intravenously 24/7 and he will probably start to feel like a million bucks.  Milrinone is magical!  It's a inotrope used to treat heart failure, by helping his heart pump and contract more effectively. 

He will spend a couple days in the CICU until we get his medicine at therapeutic doses and then move to the step down unit at the hospital.  I will then be trained how to care for his PICC line and Milrinone infusions as an outpatient.  We will then (hopefully) move into our home away from home, the Ronald McDonald House.  The plan is for Kam to then come up with Daddy and spend the summer with us.  There are day camps, library programs, children's theatres, and tons of hiking trails around.  We plan to have a fun summer keeping busy with free programs and maybe even a couple day trips to the beach.  Daddy is hoping to spend a little bit of time with us this summer off and on, but it's his busy time of year at work. 

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As I was making all our travel arrangements yesterday, everything fell into place beautifully.  I got great deals on our airline tickets, car rental and despite all the hotels being booked for Stanford University graduation, I got a great deal at a hotel around the corner from the RMH.  The insurance is approving everything that is being submitted without hassle as well.  The timing will be great as we are starting to hit triple digit temps in Phoenix and we will be spending the summer in beautiful Palo Alto. 

 

Thank you for your continued prayers and support.  Every penny made on this blog with the ads is directly deposited into Owen's transplant account and used to pay for all this travel, medicines, and hospital stays.  We appreciate you all so much and can't wait to share the next journey with you. 

 

Until then, we have almost everyday of our calendar booked with things to do.  Sundays are our days of respite and calm, so I crossed those off as our days to unwind as a family.  We need a little calm before our upcoming adventure.  Other than that.. making memories and squeezing in lots of pool time before Owen is banned from water due to his PICC line.

IVIG Round 11 Part 2

Owen and I slept great in the hospital last night, which is saying a lot when sleeping in a recliner.  Owen woke up early to his nurse administering IV Lasix, he was not happy.  We decided to get up and start our day.  We finally started the IVIG infusion at around 10pm, which was a bit crazy since we waited almost five hours for pharmacy to deliver his medicine.  It shouldn't take that long.. it was a bit extreme and the head of pharmacy will be notified.   

We watched more movies yesterday... Cars, Toy Story, Meet the Robsinsons in Spanish, Curious George, then finished the evening with a little Lion King in Spanish.  We shared a breakfast burrito for breakfast and it took Owen a while to make friends with the morning.  He was a bit grouchy. 

He perked up when Child Life came in for the morning.  We played Connect Four, built a train set, painted cars, and played SpongeBob Go Fish.  Then the book cart came by and Owen picked out an Ironman book to keep and after reading that a few times, he is ready to rest.  It's not even 11 and we are tired. ;)    I just closed the doors, curtains, blinds and shut down the lights.  Wreck It Ralph just started, so my boy is reclined in the recliner snuggled up with blankets. 

Maybe we'll get a little nap in before it's time to wrap things up.  Owen is scheduled to end IVIG around 4, but it looks like we may get out of here sooner.  It's been another pretty simple infusion and our last at PCH.  I still can't believe that in four short weeks we will be in Palo Alto.  It seems surreal, but we have such a busy four weeks ahead, I know time is going to fly by.  It always does.

IVIG Round 11

It's true.  It has been a full month since Owen's last IVIG treatment.. can you believe it?!   I had a long chat with Owen's transplant team at Stanford this morning and we discussed Owen's upcoming admission and stay in Palo Alto.  We discussed a double lumen PICC line for easy access of labs, IVIG and Milrinone (that will run continuously).  We talked about the time he will spend in the CVICU, on 3West (or step down unit) and then life outside of the hospital on Milrinone (which isn't common practice).  We talked about blood types and details of his UNOS listing, which I'll get into more detail another day.  I'm too tired already to explain it all.  :)

We arrived at the hospital at 4pm, got Owen settled into his room by 5 and an IV in by 5:30!!  WOOT!!  The IV team was backed up with PICC line placements which are time consuming.  Since we already had two nurses and the CVICU intensivist in Owen's room, I decided one of them could place an IV sooner.   One stick and Dr Menon had the line place... no pressure as I hovered over him holding Owen's arm straight. 

Now we have his orders in the computer for meds and we are waiting on the IVIG from pharmacy.  Owen's dinner of chicken noodle soup and chicken nuggets just arrived.  He just stole my recliner, which is also my bed for the evening, and decided to watch Cars and chow down on peanut shells. 

Our favorite cardio, Dr Stock, is on call so we had a nice catch up chat with him.  All is well!! :) 

Hopefully the night will go smoothly, Owen' won't have any reactions to the IVIG and we will get a good night's rest.  Life is good.

Mother's Day!

My weekend was wonderful and Mother's Day was perfect!  Saturday was filled with dance competitions and Owen came along to cheer on the girls.  Before I went to bed, Owen woke up from a dead sleep puking everywhere.  I felt awful for him, but got him bathed and everything cleaned up.  It was a really long day and I was looking forward to a relaxing Mother's Day.  It did not disappoint.

After a 6am wake up call from Mr Owen... I went back to bed until 9:30!  My hubs made Belgium waffles with strawberries and real whipped cream.  YUM!  Kam and I went for Mani/Pedis which is always relaxing.  We came home to get the boys and went out to a late lunch/early dinner at Cantina Laredo.  It was so nice to not have to cook all day! 

Early evening, we went to Nana's house and everyone brought  desert.  I am so bummed I didn't get a single picture of my Mom and Nana. :(  They are the biggest part of Mother's Day and I didn't take a single picture.  Happy Mother's Day to both of them, they are wonderful!!!  My Sister made Jibjab cards for everyone that were hilarious as always... mine is here.  My sister's is here.  We look a lot a like when you take away our hair.

Owen talked Uncle Rog into a horsey ride!!  All the kids love Uncle Rog!

Liv wanted hair "just like bobo".  Kam gave her a top knot like hers and Liv was so thrilled!! 

I love this picture.  Kam is going to be such a great mom someday... in about 10-20 years! All the little girls love their big cousin and she is such a great role model to all of them.  Where is Gigi and Lucy in all my pics too?  No idea.  I guess I was taking the day off from picture taking. 

I have to give a shout out to my kids and husband for making yesterday so special.  Carson spent a few hours on Saturday running to different stores trying to find all the ingredients to make Tiramasu, by my request.  He went out of his way to make yesterday special and I love him so much!  Kamryn made me a mom 13 years ago and I have been spoiled by her love and sweet disposition.  She is the kindest, smartest, funniest girl.. perfect in every way.  Owen came along and made me a second time mom 5 years ago and he has taught me more in the past 5 years than I could learn in a lifetime.  I now cherish every moment like it's my last and he bring a new challenge to motherhood.  Both of my children make motherhood a reward, a blessing, and they bring amazing purpose to my life.  I love you two more than words... to the moon and back a million times!!

I want to say Happy Mother's Day to my Mother in Laws, Kathryn and Monica.  Thank you for always being there for us and for our kids.  They are lucky to have such amazing Grandmas.  Mom, you are wonderful and I love you so much.  You know how much Kam and Owen adore you.  Nana.. you are the funniest, most giving Grandma, and you always have us laughing.  I know you don't always remember who we are, but you always make us laugh and tell us stories that you remember of your childhood.  We love you so much.  Happy Mother's Day to my amazing Sis who I talk on the phone with multiple times daily, you are my best friend.  To all my sister in laws, friends, heart moms, aunts, cousins.. I love you all and hope you had the best Mother's Day ever!!

Owen's Tummy Bug

Owen hasn't been feeling well.

On Tuesday afternoon he puked up all his lunch.  Then the tummy bug hit.  That evening he was warm, but I wouldn't classify it as a fever.  Then the next day (Wed) he woke up feeling fine, until around 11:30 an the tummy bug was back. He took a two hour nap and felt okay in the evening.  Yesterday (Thur), he was on his feet all day, no tummy bug present, but still a little tired. He played with Liv most of the afternoon and then he played with Gigi and Sis before dance.

Today he woke up and puked everywhere in his bed.  He has proceeded to lay around all morning and it's only 10am and he's fast asleep.  I am worried.   Is it heart failure rearing it's ugly head?  Is it just a tummy bug?

This was his cute face earlier today.   That smirk says it all. 

I did speak with his transplant team at Stanford yesterday.  They said his most recent antibody tests came back with a big fat ZERO!!!  That is so great!!   I let them know how he's been feeling and I will follow up with them later today.   Owen is scheduled for IVIG on Monday, but not if he's feeling crummy still.  We'll see.  He may just need time. 

Tomorrow is full of dance competitions and Sunday is Mother's Day!! 

Lucille Ball

Kamryn has done so many fun projects over the years, but this one was probably my favorite!  For AP Language, Kam had an assignment to pick any famous person and read their Biography.  Learn all about them, become the person, and today she will present.  Kam was so excited to choose Lucille Ball for this project.  I often tell Kam how I remember watching old 'I Love Lucy' episodes with my Grandpa ... they were so great.  Lucy is an icon and such a genius comedian!

After reading her entire biography, Kam was so excited to present today.  Her props were a Retro TV she made out of a cardboard box (I'll get a picture later), a bottle of Vegameatavegamin, and a bunch of chocolates to hand out (to represent the best episode of her working in a chocolate factory). 

Kam has one minute to give a speech on the life of Lucille Ball and then the class can ask questions.  She has to describe the hardships in her life and how she overcame them.  Also she has to pick three words that describe her and explain why.  What better way to learn than this?  So much better than writing and turning in a report on someone. 

Kam was totally into the character this morning.  I'm sure the curly updo, fake eyelashes, high heels and bright red lipstick helped.   Kam has watched a bunch of I Love Lucy episodes and clips to get ready for today.. here she is "acting" like she's crying.

I know she'll do fantastic!  I'm excited to hear about all the other characters in class.  I'm so proud of Kam's teachers for being creative in their teaching and making school so much fun!

Love this girl! 

Final 7th Grade Orchestra Concert

Last night was Kam's final 7th grade orchestra concert. I still can't believe we are wrapping up the year and that it's almost summer vacation.  This has been such a great year for Kam!  She loves playing the violin and can't wait to continue playing in 8th grade and then, into High School. 

Last night the 7th grade orchestra played two pieces and they sounded so great!! 

Kam is lucky to have such a fantastic orchestra teacher who has a lot of experience and is so fun!  She also teaches the High School Symphony Orchestra which is the most advanced orchestra.  For a little brag session about my nephew.. Connor is the only freshman (next year) that made it into the Symphony orchestra.  He is really good at the Bass and we think it's pretty cool!  Kam will get to share her concerts with her cousin, Ry, next year too.  It's so fun that my kids get to grow up with their cousins!  I have baby pictures of these two ... why do they grow up so fast!?!

Gigi Monster tried to photobomb the picture.. crazy kid.  Owen was a little wild before the concert too shooting his lazer gun and chasing his Tate around.  Thanks to Grammy K, Gpa and Gma Boulden and Gigi for making it out to the concert.  It was a great concert and we went for shakes at Sonic afterwards.  We are proud of you Sis!!! :)