Good News and Summer Fun

Our first week of summer has been relaxing and so far the triple digits aren't phasing us one bit.  I received a call on Monday with some fabulous news from our team at Stanford.  Owen's antibodies came back ZERO after his last IVIG so we can stop all infusions for now.  Two years of infusions and we finally get a little break.  We will continue to draw his antibody labs monthly and ship them off to LPCH to be tested.  If we see an increase in antibodies we will have to go right back to his monthly infusions, but even if we can get a couple months off, we'll take it! 

We also decided to change one of his major anti rejection meds from Cyclosporine to Prograf.  I'll switch his dose on Saturday and I'm totally nervous about it.  We'll have weekly lab draws and an echo next week to make sure it's at a therapeutic level and not causing rejection.  The med now causes hair growth, gum overgrowth and he's having harsh skin issues.  The hope is that all these nasty side effects will subside with the new med... with a side effect of hair loss.  No more back hair.  We kept Owen on his steroid dose until we get through this med change and we'll make sure everything goes smoothly with his biopsy in a month... then I'm really hoping we can stop the steroids. Overall.. no complaints.. we have been so very blessed with how well Owen has adapted to his new heart!

We have been swimming to stay cool and had cousins over yesterday for an extra dose of fun!  I've been teaching Owen how to swim and he's already holding his breath for a while under water, swimming to the side and finding the wall and will swim to the step on his own.  He's going to be diving for rings at the bottom of the pool soon.  For now, he's just as thrilled to throw the rings in for the girls to find. 

Gigi, my mom, Sis, Nana and all the little ones were swimming too, but I was too busy watching kids and didn't take too many photos.   It's so fun to have Kam home for summer... she is so fun to have around all the time! 

Most summer days you can find us relaxing in the family room.. Owen naked and playing with toys or on his WiiU.  Kam dancing around the house listing to Pandora on her iPad or watching Anime in her bedroom.  I'm cleaning house, fixing meals, doing laundry or making a million phone calls.  It's a good life friends.

Goodbye Junior High!

It's official.. our baby girl is now a high school student!  Junior high was two of her favorite years and she made some great memories.  We couldn't be more proud of Kam and her dedication to school.  This year she maintained a GPA of 4.4!!  Not only are all of her classes HONORS (math, social studies, science and language), but she practices her violin for the orchestra AND dances 15-20 hours a week after school!  I always joke that she makes it look so easy, but she is such a hard worker.   We never have to ask to do her homework, she puts 150% in to every assignment and even took on the challenge of online PE this year so she had a free credit open for more classes at school!  We couldn't be more proud of her and I may have been teary eyed when we watched her be awarded a Golden Scholar award for the fourth consecutive year in a row.  Owen has such a great example to look up to.

We love you baby girl!!  We can't believe you are going to be a freshman!  I feel like I was just sending you off to Kindergarten.  Time flies by too fast.. but you have made us so proud.  We love you!

Goodbye HJHS.. you have been good to our girl! We are grateful to all the amazing teachers and staff that have worked hard to teach our girl and prepare her for High School!

Recital Photos and Summer is coming!!

Only a few days left and school will be out for summer!!  To say we have been busy would be an understatement and we are excited for the lazy days of summer.  As Kam wraps up her Junior High year with finals, she is also getting ready for the end of year dance recitals.  This past weekend were recital pictures and it was so nice to drop her off at the studio with her costumes for four hours and pick her up when she was done!  I grabbed a few shots before we left of her recreational class costumes.   Contemporary, Ballet and Hip Hop will be in addition to her competition dances and the opener number she is in.  We are looking forward to a fantastic day of recitals coming up!

Owen loves hanging out at the dance studio and can't wait to watch the girls dance!  We finalized his IEP last week and I am pretty certain he will be ready for first grade in the fall!!  I am so excited for him to experience school and everything that comes along with it.  He has worked so hard in Kindergarten at home this year and I am amazed at how quickly he caught up to his peers.  He is reading so well and his math skills are fantastic.  We need to work on his writing this summer, but he's picking it up fast. 

We have some exciting news to share this summer and we have so much fun planned.  I am looking forward to more time to blog!!  We only have three days left... we can do it!

Mother's Day

I had a wonderful Mother's Day and am so lucky to be a mom!  I don't need flowers or fancy store bought cards... just a day with my family.   Owen and Kam made me cards which were super creative and made me laugh.  We had waffles with fresh fruit for breakfast.. C did the dishes and Kam washed the syringes for me!  That was more than enough! 

It was a gorgeous 85 degrees outside so my dad grilled at the park and we let the kids run free and play.  It was perfect.  It was nice to spend the day with my Nana, Mom and Sis.  Thanks for making my day special! 

Monday morning came on with a burst of the sickies and tons of paperwork to be completed before Owen's IEP meeting this week. :)   A mom's job is never done.. I wouldn't have it any other way. 

Palo Alto -- IVIG Time

It has been a LONG day to say the least... but we made it to Palo Alto. Owen's insurance covers a portion of our travel expenses, so I may have been totally stressed out yesterday when we didn't get our airline tickets until 10pm.  The good news is that everything worked out and we arrived at the airport in plenty of time.  Owen loves to check out the airport shops and found these hilarious bug eye vision glasses.. I considered them for a whole second until I saw the price tag.

We settled on an overpriced pet squishy lizard.  Owen swung him around by his tail the entire wait at the terminal and only hit a few people.  Lucky for him, he's adorable when he apologizes and nobody cared.

We had a pretty uneventful flight, aside from two bathroom breaks and spilled soda... like everywhere!  I may have let him just wear a tshirt and pullup the rest of the flight.  We grabbed some lunch in San Jose and headed off to our rental car making it to our hotel in Palo Alto at noon.  Of course the room wasn't ready yet so we headed off to the RMH to play.

The weather is always perfect in Palo Alto... Owen and I sat on the back patio at the RMH and played for a good hour.

We checked into the Short Stay Unit at 1:00 and headed to our teeny, but PRIVATE infusion room.  This is seriously it.. aside from the bathroom to the left of Owen.  I get to sleep in that cozy chair tonight... we started IVIG around 3pm, so we should be outta here by 4am and checking into the hotel for some real sleep. 

There was a different lady from Child Life here today (not our usual) and she was super nice.  She promised to go get Owen a prize for being brave and to pick up some games for him to play to pass the time.  She worked on some "strategies" to get Owen to stay calm for his IV placement and labs.  I tried to be supportive but knew that singing the ABC song while getting an IV placed was just not gonna happen.  So sure enough.. it took two nurses and myself to pin him down and he was in full out hulk mode as soon as that needle was placed and the digging for the vein began.  It only took two pokes to get a good IV and labs, but man it doesn't get easier!  He just wigs out and then breaks down in tears when it's all over and then he apologizes to the crew for losing his cool.  I noticed that child life disappeared half way through the process.. apparently she got freaked?  She did never come back.  Owen and I took a little walk to the 3rd floor playroom and picked out some superheros and games to keep him busy for the night.  Monopoly Jr was a hit!

Then he watched a little Spiderman and Despicable Me 2.  His request with dinner was a Haagan Daz Ice Cream bar with almonds... seriously?  All they have is the Styrofoam cups with chocolate dairy something unexplained inside of them that looks like ice cream.  I hiked over to the adult side of Stanford and found an awesome Ice Cream vending machine next to the ER with all the Haagan Daz a boy could want.  Major mom points!!

Owen's tray of bacon and grapes just showed up.. time for dinner!  We've had an echo, were seen by our transplant team and it's only 7pm... only nine hours to go.  Please say a little pray that these antibodies remain at zero!  If this is a good one and he remains zero in June for labs, we may get the go ahead to space these out every 90 days.  Two years of monthly infusions is just not fun for a little guy. 

Tune Ups

It's Cinco De Mayo and we are spending our day waiting for the air conditioner repairman to come between the hours of 10 and 3.. which means he'll probably get here around 4!   We have air, it's just needing a little tune up. 

Owen had a little tune up his own this week... a much needed haircut.  His usual girl is out, so we tried a new kid salon and he loved it.   

I think he mostly liked the fact that he got to validate his card and a prize shot out of the machine.  This boy is a sucker for prizes.. no matter what they are!

There is only 14 days of school left and we are so excited to have Kam home all summer.  Don't get me started on the fall.. sending both kiddos off to school is going to break this mama's heart!  I'm going back to school too, so hopefully that will keep me busy.  In the meantime, we enjoy passing the time in the carpool line to pick up Sis.

Kam came out with war paint all over her face.  They had a pastel paint war in Art class... psh.. 8th graders and their crazy antics.

We took the kids to see the new Spidey movie this weekend.  Owen was counting down the days.. literally.. 4...3...2...1.. he couldn't wait!  It did not disappoint and he even earned the new Spiderman 2 WiiU game that he played most of the weekend.

After the movie we headed to Stride Rite since my Sis was there with her girls buying summer shoes.  Bridgit was so adorable running around in her new shoes.. she saw me walk into the store.. and broke down in tears!  Someday she'll realize her auntie is awesome.  I also learned a valuable lesson.. don't take Owen shopping for summer sandals after watching a Supehero movie.. he picked out the most ridiculous Spidey sandals that were so impractical and HAD to have them!  Nana was buying them for the kids so I couldn't object because that's what he wanted.  I may have exchanged them for something a little more practical and less hideous and even bought him a new pair of spidey flip flops for good measure.  That was dramatic.

Since Sunday was "May the FOURTH be with you" day.. whatever that means?  We headed over to the Disney Store for Jedi Training and free light sabers for all!  Owen was just about in Heaven!

Kam has been begging me to let her cut her hair off.  It was long, dead and broken after so many updos for dance and flat ironing.  I obliged and took her to the salon for a little pampering.  She looks adorbs, but I'm already missing her long locks.  She loves her new hair and it's still long enough to put it up for dance.. win win!

That's a wrap.  The Air Repairman just called and he's in our neighborhood.. it's not even noon!!  Of course it feels nice and cool in here now... wouldn't it be? :)