Firefighters and Flu Shots

I'm totally counting down the days until we go home. There has been three fire "emergencies" at the RMH in the past week. Nothing serious, mostly burnt toast, but enough to have us evacuate the building and Owen freaks out each time like the building is going to explode. Good memories are being made.

Saturday was a 'get er done' kind of day, nothing exciting to report. Sunday, I promised Owen we would go see the new Cloudy With a Chance of Meatballs movie. He loved it and it gave us something to do all morning.   He picked Chipotle for lunch... so we shared a kids taco plate and he ate the side of beans.  I have him on a scheduled eating plan in hopes to lose the Gtube one day.  We'll see. ;)

Last night was our monthly birthday dinner with the PA Fire Dept.  Owen loves it when they come!  It was so great watching the kids line up to take turns holding the fire hose.  Something so simple as a hose had these kids entertained!!  The food was fantastic as always and we had a good time.

I woke up this morning with goobers in my eyes.. awesome.. pink eye?  After a quick run to the hospital for Owen's labs, we headed to my doctor and grabbed some drops.  She doesn't think it's pink eye, but said to use the drops to be safe.  I also went a little disinfecting crazy!  We skipped school to be on the safe side.  While I was there, I decided to get my Flu Shot and DTAP booster.  Which brings me to the next topic.

Owen's immune system is extremely compromised right now.  He can't have any vaccines for at least six months, so that means no FLU shot or any other boosters.  He hasn't had any live vaccines in the past year (no chicken pox vaccine, no MMR), so he is vulnerable!  I am keeping him out of school this year until he is on smaller doses of anti rejection meds and off the steroids, but we need to protect him.  If you or your kids want to hang out with Owen this winter, you have to get a FLU shot! :)  I hadn't had a DTAP for years so I went ahead and got that one too.. I think it's every 10 years you need a booster.  Thanks for helping us keep Owen and his new heart healthy!! :)

Final Family Album Project Shoot

We had our final Family Album Project photo shoot last night. I gave Owen freedom to choose his own props and expressions. Here you have it folks...

He had a great time and that's all that mattered, even without the perfect shot.  We are ready for our last 12 days in Palo Alto!!  Assuming all goes well and we stay healthy!  I am starting to get a tickle in my throat and feeling unusually tired, so I have been taking a ton of Elderberry syrup, sleeping when I can and taking really good care of me.  I. Can't. Get. Sick. 

Owen is feeling fantastic and can't be stopped!

Biopsy Results, Missing Teeth and Giants

Owen's 7th biopsy went great! He was a goofball all morning and fell right to sleep in the cath lab.  He woke up an emotional hot mess, but snapped out of it when the Versed wore off.  It took a few hours this time, so I think we'll skip the pre med in two weeks.  Anyway... we got the results back this afternoon and Owen had another ZERO for rejection!!  We are thrilled! 

The good news just keeps getting better.  Remember the last few times we have checked his antibodies before/after IVIG and the numbers were in the 20,000 range {ideally 0 is what you want}.  We had discussed indefinite IVIG and had the conversation about Plasmapheresis if it came to that.  On Thursday, during the transplant team's HLA meeting, the pathologist asked "what happened to Owen?"  The doctors were shocked to hear that his antibodies are ZERO!!  Not a single one.  They stained the tissue taken for biopsy to check for any signs of antibodies and none.  They even re-ran the blood work from the pre and post IVIG labs and nothing.  Not a single antibody to be found.  We will check again in two weeks when he gets his next round of IVIG and then again, in November.  How amazing would it be if his antibodies are gone and we can stop IVIG!?  Owen has been doing these monthly 18 hour infusions for the past 14 months... I know a boy that would be thrilled!!  I certainly believe in the power of prayers!!

Today at school, one of the pitchers for the SF Giants surprised the kids with a visit.  He brought them "snapback hats" and autographed them.  Owen told them how much he loved his "San Fransisco Diamondbacks hat"... always a funny boy. 

He was also excited to show off his missing tooth... that's right.. tooth number 5 fell out this morning!  We had to do some minor dental surgery to get it out though.  I tried pulling it out with my fingers, wiggling it, tied some dental floss around it and it was so slippery I couldn't get it.  Owen had me call daddy since he is a pro and Owen thinks he is a genius for suggesting I try a paper towel to get the tooth.. and pop.. it came right out.  I'm going to start calling him toothless and the tooth fairy is going to need a raise to keep paying for all these teeth.

Two weeks from today we should be on the road home.  I still can't believe it.   Owen is such a different boy than he was when we came.  It's incredible and we are so, SO blessed!!

Weekend Rewind

We had company this past weekend and it was such a great time.  My Mom, Nana, Sis, Gigi, Lucy and Livy flew to Palo Alto to see us and hang out at our home away from home.  Owen was so excited to "take Gigi down" and he did!  He was so excited!!!

The first day there were here (Sat) it rained all morning.  The kids were happy wrestling, making balloon animals and fighting with balloon swords.

Lucy's first balloon animal/sword/flower.. she also lost a tooth that morning.  Between Owen and Lucy, they are making bank from the tooth fairy!  When the rain stopped and the clouds parted, we decided to head out to lunch.  We sat on the patio at CPK and were talking about how nice it was outside.  As soon as they brought our food to the table, a sheet of rain started pouring out of the sky.  Our food was soaked and we were drenched.  We paid as they boxed up our food (assuming they were making us new food) and got packed up in the car.  We got back to the RMH to find that they boxed up our soggy, soaking wet food in to go boxes.  All we could do was laugh at the situation and eat our Sprinkles Cupcakes instead. 

The next day, we headed to Half Moon Bay.  We got there in plenty of time to get an awesome table overlooking the harbor.  The kids were playing in the sand and we were talking about how relaxing and calm it was.  Our drinks came, the kids ordered their rootbeers and we ordered our food.  Then a swarm of bees decided to join us so, kids screaming, we headed indoors.  Our lunch was great, but would have been better listening to the waves.  I guess the bees wanted our rootbeer.

The kids still watched the boats come and go at the harbor. 

After our lunch, we headed to the beach.  It was gorgeous outside!!  We set up our blankets and got settled into the perfect spot.  Again, the bees were everywhere.  The kids played and stayed as calm as they could, until one decided to sting Owen on his ear.  Ugh.  He was so over it at that point and so I scooped him up and off to the car we went.  Followed by Gigi who was taken down by the icy cold waves and my mom, who was ready for a rest.  Kelli stayed at the beach and braved the waves (and bees) with Nana and the little girls.

Good news.. Owen is not allergic to bees. :)  Bad news... I got pulled over by a cop on my way out of town for running a stop sign, that I didn't see.   He was so sweet and didn't give me a ticket and we were on our way.  Again, all we could do was laugh at all our luck.

On Monday, we ditched school at the hospital and headed to the Pier in San Fransisco.  It wasn't too crowded and Owen stayed in his stroller, masked up.  We started with the carousel and Owen wanted to sit in the teacup and spin super fast.  It was fun, but we were so dizzy.

The girls hadn't seen Alcatraz or the barking seals, so it was exciting for them.  Owen was kinda over it all early on.  He wanted fudge from the candy store.

We hit up the Magic Shop so Gigi and Owen could buy a trick or two.  Nana, and Mom trying to get Owen to take a photo... ha.

Gigi picked out a magic flower... she's the new Houdini.

Owen picked out a magic wand and a creepy snake.  The little girls got super fluffy puppets at the puppet store.  We had Chowder with Fish and Chips for lunch and ate outdoors.  It was beautiful and a little chilly.

On our way out... we had to say our goodbyes.  For only two weeks until we get home.  The fam headed into the aquarium... too many germs for us.  We headed to the parking garage and after paying $24 (YIKES) we headed home.  Love you guys and we miss you already.

As soon as my fam got to the airport last night, they found out their plane was cancelled for no reason.  So they had to jump on a later flight and didn't get home until super late.  If something could go wrong... ha.

Today is Owen's 7th biopsy and we are getting ready to head into the cath lab.  Prayers and good thoughts that all goes well! :)

Spending Time Together

Summer is coming to an end and it's going to be colder before we know it.  All the trips to the pool, water parks, and outdoor BBQs with family will end.  Homework and school routines are in full swing and pretty soon all our dance competitions will begin.  I know with the hustle of the fall months, it's harder to make downtime for family.  We get caught in the routine of coming and going and barely taking the time to ask how everyone's day was. 

My challenge this fall, especially after we go HOME, is to carve out several times a week for family activities.  Whether it be just a quick walk around the neighborhood, or a bike ride to the park, it is so important to take the time to spend with each other. 

Since we are in Palo Alto, and away from our family, Owen and I have been creative in making our own fun!  Owen's immune system is significantly compromised right now due to his heart transplant, so we have to avoid public places.  One of our favorite things to do is go outside at the RMH and set up an afternoon picnic.  He loves to talk to me about his day at Kindergarten, even though I was there the entire time, and he likes to talk about things he wants to do with Daddy and Sis when they come to visit.  We created a little family fun list for Labor Day weekend while we were picnicking.

- Go to the Beach and cook steaks on the grills
- Go to San Francisco and eat seafood on the pier while watching the barking seals
- Go to the Ice Cream sandwich shop
- Go for a long walk in the forest (the gully behind the RMH)
- Take Daddy and Sis on a hike to explore the Dish (a hiking trail)
- Find a park with lots of swings
- Of course, have a picnic almost everyday outside. :)

I have mentioned several times that Owen has been eating so much better lately!  I'm sure the high doses of steroids are helping his appetite and he is loving Capri Sun Super V Fruit and Vegetable Juice Drink!  They are easy for me to grab on the run and his favorite is the Capri Sun Super V in Apple.  It has no artificial flavors, colors or preservatives, and is a good source of fiber for this boy who needs it!

This picture is great.. I was trying to get him to smile but he wouldn't stop sipping.  These cheeks are so adorable... I don't think I can get used to them! :)

We usually go for a long walk after our picnic because there are fantastic trails all around the RMH for us to explore. We are also trying to get some cardiovascular exercise in and work his new heart. As you can see, Owen snatched my favorite Capri Sun Juice drink, Capri Sun Roarin' Waters Flavored Water Beverage, it’s my favorite because it's low in calories.  Owen thinks it's just a fun, delicious way to rehydrate after a long walk in the middle of the afternoon. I'm glad I found a drink that Owen likes and I can feel good letting him drink it! 

Take time to relax and enjoy time with your family.  Carve out some time each day for your family to come together, even if only for 15 minutes. Instead of always being in a rush, step back and try to take things slow. Maybe don't sign up for that extra soccer team practice or school volunteer project, and use that time to plan a family activity. I know it's easier said than done. I hope that I can be better at this when I get home. 

 

To learn more about all of Capri Sun's Juice Drinks, visit their website or Facebook Page! 

Cardiology Update

It has been a fun, busy week so far.  Today we had our bi-weekly cardiology clinic, but first we headed down to the lab for a blood draw.  Owen was so tough and just hugged me and said.. "this is gonna hurt..."  No tears.  Just a brave boy and we were outta there.  His echo was over an hour because there was a cardio fellow that was learning how to use the echo machine.  Owen was so patient and watched TV the entire time. 

His clinic appointment couldn't have gone better.  His labs came back perfect.  His AMR (Antibody Mediated Rejection) from his biopsy last week was ZERO!  His cellular rejection has continued to be ZERO!  He is growing a ton.. up to 45lbs and (almost) 44".   Everyone was stopping in to check out his new blushed cheeks... they are rosy all the time.  He loves to listen to his new heart at each visit and always repeats the beat.. "woosh...woosh...woosh...ba bum ba bum."  To say we are grateful would be an understatement.

After clinic we headed back to the RMH for lunch and both crashed for a good hour.  Owen woke up to his weekly Reiki massage at the RMH, which he loves and looks forward to! 

Tonight is my favorite at the RMH.. soup night!!  Owen would disagree with me... he like Tuesday night because it's BINGO night!  Last night he won a giant Star Wars Lego set at Bingo and we stayed up until 10pm building the ship. 

I am so far out of the loop... when do all the new fall tv shows start again?  Owen has me watching Cartoon Network and Nickelodeon whenever we have time for TV.  I figured I'd give him the control over the TV for the next three weeks until we go home because we don't have cable at home.. and never plan to.  I can watch all my shows online... but do you know when they begin??

Something is Missing

Do you notice anything missing??

Owen's 2nd front tooth fell out yesterday.  While we were wrestling yesterday afternoon, Owen was biting my pants...or so he says.  When I broke free of his ninja grip on my leg, his tooth flew across the room.  The tooth fairy did not disappoint and this little boy will be missing two front teeth for Christmas... queue "All I want for Christmas is my two front teeth...."

Family Album Project and Fun

We have had a busy couple of days with Kindergarten and therapies.  Owen is pushing himself so much in therapies.  Today he practiced cutting with scissors and did a better job that I normally do.  He learned to ride a bike, climbed stairs, walked through the hospital to school and back to the car, zipped his own jacket, climbed into his car seat and buckled the 5point harness.  The changes I see in him over the last two months since he got his heart are unreal... a miracle.. a blessing! 

We have weaned his steroids down to 50% of his original dose, so these cheeks will be deflating over the next six months.  They are adorable for now though. :)  Last night was The Family Album Project at the RMH.  Owen was first and he had such a great time.  Here are links to the other FAP photo shoots while we have been at he RMH... here... here... here.

Last night was followed up with an end of summer BBQ at the RMH, thanks to volunteers from Wells Fargo.  Cinderella also showed up to do face painting and balloon animals.  There was so much great energy, a lot of families were at the house having fun.. always a good time!

Owen's super muscle man Spiderman... and his Spidey face painting on his cheek. 

He has the longest eyelashes and we are both loving his moustache.  He is starting to get some hair on his back, but it's blonde and fuzzy.  After we wean the steroids down to a really low dose, we will talk about switching from anti-rejection meds to the one that doesn't cause hair growth in all the areas that little boys don't want hair.  It's a minor side effect considering the big picture though.

Today was art day in Kindergarten and Owen made this awesome bird!  He is not much of an artist and has never been interested before, but he looks forward to Friday art days.  There are only about 3 kindergartners at the hospital school and so they join the big kids for art projects.  He colored, traced and had a great time for the full hour he was there.  So impressed!! 

That's wraps up our week.  What are your weekend plans?  We are going to hang around Palo Alto, since we can't go far, and see what we can find.  There are a ton of hiking trails we haven't tried yet and I still want to explore Stanford campus.. it looks really pretty on the post cards and we are across the street.  :)

Biopsy Results

We were finally discharged at 3am this morning and back to the RMH to catch a few hours of sleep.  Owen is unusually crabby today, which is super awesome.  The combination of IVIG, anesthesia and lack of sleep just don't make for a happy kid.  I feel a little like a zombie myself, so I get where he's coming from.

We met up with Subrina and Chase at CPK for lunch. Love having friends that have walked this path before us.  Chase is Owen's buddy from home, also HLHS, and had his transplant at LPCH about 18 months ago.  He is having pretty high cellular rejection so keep him in your prayers.  Wish I had a picture of the silly boys from lunch, but Owen was not having it.  It was a fun afternoon and I needed that!

Owen's biopsy results came back as ZERO {cellular} rejection once again!!  We are doing the happy dance and are so grateful!  We won't have his AMR (antibody rejection) scores until Friday at the earliest and the end of next week for the IVIG antibody results.  Praying that his antibodies have dropped and the IVIG is really effective.

I have started working on getting Owen's therapies scheduled back home for October.  I also need to get his Kinder registration done at our home school so we can get a teacher lined up for home schooling in the fall.  The risk of getting sick during RSV/Flu season is not worth it. 

Trying to stay positive each day and keeping our eyes on the big picture.  We are both exhausted from all the appointments and I can't wait to take Owen away from all of this.  I want him to just have a chance to be a boy!  A break from all the doctors appointments, biopsies, infusions... he has earned that. 

Biopsy #6 Recovery

Owen sailed through his biopsy today... no issues.  His heart pressures look great and the SVC gradient, which we were talking about needing to stint open, is significantly improving on it's own.  We won't know the biopsy results until tomorrow, but I'm guessing it will be good news. 

We got settled into our room in the short stay unit for Owen's infusions and we should be out of here by about 5am tomorrow.  See that recliner with my laptop... that's a wannabe recliner and I get to sleep in it tonight.  Try not to be too envious.

Child Life brought Owen this awesome Batman Jail and told him he could keep it. He has been playing non stop for two hours with Batman, Bane and the jail.  It's been wonderful.  No TV.. no noise.. just quiet play and using his imagination. 

Cardiology came in to do his weekly clinic bedside and Owen looks great.  His labs were all perfect.  The only thing we are really watching is those darned antibodies.  The staining of the biopsy samples have all come back with level 1 AMR (Antibody Mediated Rejection) but it's not affecting his heart.  The resolution for the AMR is IVIG, which we are currently doing.  Our hope is that they lower over time and he responds well to the IVIG, as he has in the past.  We did talk about the possibility of Plasmapheresis, which is pretty invasive.  It is most effective when used early on with the highly sensitized patients with very high levels of antibodies, so it may be beneficial to do it now, rather than later.  They will discuss it on Thursday in their weekly HLA meeting (antibody patients).  The argument could be to just let him be since his antibodies don't seem to be affecting his heart (function, pressures, valves). 

We are tentatively scheduled to go home in four weeks pending things continue to go great.  Yay!

Biopsy #6

Owen is back in the cath lab for Biopsy number six.  One more step towards going HOME.  We are hoping and praying for great results today.   Owen was in the best mood this morning as we were getting ready to go to the hospital.  He was running all over the family room jumping over pillows onto the air mattress and so happy!  His good mood continued into preop and he loves to listen to his heart.

He insisted on bringing his heart hug pillow.. thanks IHH for the pillow.. he loves it!  We gave him a small dose of versed to take the edge off and we walked to the cath lab.  I dressed up in my hazmat suit and played anesthesiologist again.  He picked grape for his mask flavor and went off to sleep dreaming of spiders and snakes. :)

We will stay the night in the short stay unit and Owen will have 18 hours of infusions.  I'll post an update in a bit. :)

GoodByes

We had such a great week!! Lots of time spent with Daddy and Sis, but all good things come to an end. We took them to the airport this morning and had to say goodbye. It has been a long 12 weeks  living apart, but there is light at the end of the tunnel.  Best case scenario, we'll be home in five weeks!!  We will miss these two a ton, but they are happy to be going home.  We can't wait to join them.

Here is our other half walking away as we drove back to our home away from home.  Our home is Palo Alto for now, and it's not a bad place to be.  We have more visitors coming in two weeks and the time is really passing by quickly. 

Owen has another biopsy on Tuesday, followed by 18 hours of infusions.  He is doing so fantastic in his therapies and at school.  This is exactly where we need to be right now.  So we will be patient and continue moving forward making the most of every day. 

Fun with Family!

We have had such a great week having our family together.  I know it's been nearly a week since I updated but for good reason.  We made it back to Half Moon Bay on Sunday for a little fun in the sand {the water is way too cold}.  There was a ton of traffic heading to the ocean for Labor Day weekend, but I'm so glad we went.  We had a really great time!

After the beach, we headed to a Deli in Half Moon Bay and had some yummy deli sandwiches on homemade bread.  The weather was perfect, breezy and cool and we had a shady bench on the patio.

The Saturday before, Monica, Kam and I went for much needed pedicures.  It was girl time.. while the boys hung out with Gpa Todd at the hotel and fed the Koi Fish.

For Labor Day, we decided to have a little BBQ at the Ronald McDonald House.  I picked up a few slabs of ribs at Costco and we cooked them in the oven for 3hours.. then transferred them to the grill for another 30 minutes {thanks for the idea dad}.  They were amazing, fall off the bone, delicious ribs!  I made some corn on the cob and we had a little feast.

While the ribs were cooking, Owen {or Daddy} was playing with the race cars.

Auntie Janesa {C's baby sister} came down from San Fransisco to hang out with us for the afternoon and to see her Dad.  Owen was cracking us up with all his giggle attacks.. he just starts laughing and cannot stop.. it's pretty great!

We went for Ice Cream at Tin Pot creamery.. best ice cream... so $$!  {Auntie Janesa, Daddy, Owen and Gma Monica}

Grandpa and Grandma had to leave to get home to AZ. :(  It was so great to see them and we were glad they came to visit for the long weekend.  The rest of our week has been pretty low key, routine, but fun.  Owen has been going to Kindergarten every morning, therapies in the afternoon, Legos with Daddy and Sis.

He loves rolling around on Kam's air mattress in the fam room and tackling her.  We have caught up on some Netflix movies, eaten way too many sweets, snuggled in bed, and are just enjoying being together. 

This is a little catch up of our week.  It has been wonderful.  I'm sure Daddy and Sis are a little bored and can't wait to get home.. to normal life.  We are looking forward to going home too!  We are hoping to go home in mid October... that is a best case scenario! :)