An Overdue Update!! :)

It has been a whole week since I blogged.. geez. Time is just flying by and life is so busy!  We are finally getting cooler weather in the desert and it is feeling a little more like Fall.  I realize I never blogged about Owen's biopsy results... he had a rejection score of 1A.  Which means he basically has no rejection and he is now only on three medications in the morning and four in the evening!!  For those medical peeps out there, he is on...

Prograf & Cellcept for Anti-rejection
Asprin for blood thinning since he has a stent in his SVC
Diltiazem for blood pressure
Omeprazole as his acid reducer for his tummy

That's it!!!  Isn't that incredible?!  I find myself checking and rechecking his meds each morning when I draw them up because, surely, I am missing a few.  Before transplant he was on 9 meds three times a day.  Post transplant we upped the count to 13 several times a day.  I am thrilled with five meds!  We go back to visit our local cardiologist on Dec 4th and back to Stanford the first of Feb.  I was looking back on the blog to figure out when the last visit with our local team was.. May.  Then I saw this picture I took back in May.  I couldn't get over the transformation Owen has made in the last six months. 

He kind of looks like a different kid.  His hair lightened up, he lost his caterpillar brows and his back hair is almost gone.  His gums went back to normal and his teeth fell out and sprouted.  He totally thinned out with weaning off steroids... now I'm just waiting for a growth spurt! 

I mentioned this past week was busy.  Kam had an orchestra concert that I barely made it to after flying home last Wednesday.  She did a great job and the High School orchestras sounded amazing!  I am looking forward to their Christmas concerts.  This Saturday, she was back at the High School for an orchestra competition.  When I picked her up she said.. "don't forget we need to go get me a dress for Homecoming tonight!"  It was fun shopping, just the two of us, for hours!  She found the perfect dress and she looked like beautiful! 

Our rule is no dating until 16, even though many of the other 14yr old Freshmen went with dates. Kam and her sweet friends decided to just go together and have a fun evening and they had a GREAT time!!  I picked her up at 11pm, after Heart Moms Night Out, and I loved hearing every detail of her evening on our way home.  I am so grateful to be this sweet girl's mom!!

I suppose I should also update on baby number 3!  I wish we had a name picked out.. but we aren't even close!  Greyson, Augustus, Logan, Lincoln, Zayne, Benjamin... keep the name ideas coming... nothing has stuck yet.  I am 31 weeks along as of today!!  Can you believe how fast the time has gone by?  Only 9 weeks left!!  I am having symptoms I haven't experienced with the previous two babies.. Braxton Hicks, lots of pressure, and I'm pretty sure this baby is going to come out on his own and I may actually get the VBAC I am hoping for!  Wishful thinking?  :)  We still need to shop for some essentials like diapers and clothes, but we have all the big ticket items ready.  I'm still waiting for the nesting phase to kick in... I'm ready.. anytime now.  For now, I am just tired and look forward to 9:30pm when I can finally lie down and I'm out cold!

Finally.. a shout out to my husband!!  He has been tolerant of my complaining and has been helping me out a ton.  He works hard so I can stay home and do what I love most!  I don't know what I'd do without him.  Love you babe.

 

Annual Biopsy

My favorite travel buddy and I made it to Palo Alto yesterday afternoon.  Travel days are always exhausting, so after a quick dinner at Chipotle and the Melt, we headed back to our hotel to enjoy our Sprinkles cupcakes. 

This morning we had an early wake up call!  We made it to the hospital by 6am and were ready for Owen's annual biopsy.  I realize we have had (what seems like) a million biopsies, but the annual biopsy is the one where they get a good look at the coronary arteries.  Transplant patients are at high risk for developing coronary artery disease and is actually the number one reason patients require retransplantation. 

Preop was uneventful.  Owen was quick to strip down to his Spidey undies and we get him all wiped down with the surgical wipes.  I dressed up in my hazmat suit and walked him back to the cath lab.  There is something so adorable about my brave little guy in nothing but his Spidey undies and hospital socks wandering around the cath lab talking to the team.  He climbs up on the table and helps his anesthesiologist make a flavor cocktail for his anesthesia mask and talks his way off to sleep.  He is braver that I would ever be!

Two hours later, he was back in recovery getting his post op echo.  He was still drowsy, but feeling good as he woke up from his large dose of Propofol.. his anesthesia of choice.  Dr Peng came in to let us know his pressures and coronary arteries look perfect!!  His heart function is wonderful and we couldn't be happier!! 

Owen has to lay flat on his back for four hours with his leg straight to prevent bleeding.  They moved us to a cozy room in the short stay unit to order food and relax.  Owen is watching Wreck it Ralph and eating everything in sight.  He is happy and chill.. so grateful for this boy and his love of hospital life.  He is so polite and keeps telling the nurses how much he loves getting attention.  "This is the life!"  I'm not sure it's "the LIFE", but it's HIS LIFE!  I always say that, but it's so true.  This is all he knows and he is happy as can be with it. 

We should be out of here by around 2pm and back to the hotel for a quick nap.  We'll hit up the town this evening for some dinner and a visit to the RMH.  Thank you for all the prayers.  We'll have biopsy results tomorrow at transplant clinic before we fly home.

Goodbye Disney

Thursday was our final day at Disney.  It was busier and hotter than ever (at 100 degrees).  C and Kam started with Space Mountain while Owen and I stayed indoors to beat the heat.  We all made our way over to the first Jedi Training of the day as this was the one thing Owen REALLY wanted to do!  He waved his arms and smiled really big and they picked him to become a Jedi Master.  We were all smiling as we watched Owen get so excited and take his Jedi Training VERY seriously!  He was so thrilled and loved fighting Darth Maul.  He carried his little certificate around with him all day.. it was a huge deal for this little guy!

After riding the little rockets in Tomorrowland, followed by Buzz, we headed over to Fantasyland to ride a few more rides.  Our lunch reservations were indoors (thankfully) at Carnation Café.  We settled into our booth and we were kinda thinking our day was over after lunch.  We are from Phoenix.. we can do heat.. but nothing is fun about doing Disney in 100 degrees.  Daddy and Kam had fast passes for Big Thunder, so after lunch, they headed there and met us at Pirates for one more ride!  Then I had the genius idea of catching the Disney Railroad back to Main Street instead of just walking.. it was a long ride.  At least we can say we rode it!  :)

After we all showered and changed at the hotel, we relaxed while the heat of the day passed.  We headed back to Cali Adventure to finish off our evening.  As we were walking down Hollywood Blvd, we found Turtle Talk with Crush and Art of Animation were getting started.  C took Owen to Crush and Kam and I went to draw!  Kam loves art and drawing so this was perfect for her! 

We drew Olaf and I will save you my horrific rendition of him and just share with you Kam's! :)  Owen loved Crush and raised his hand to ask "Do turtles eat Octopus?"  Good question little buddy.

It was finally time to do my favorite ride at Disney... Tower of Terror!  Owen thought it was just another haunted house with an elevator ride, which is sort of true.  As soon as we boarded the ride he said "if I die, I'm coming back as a ghost to haunt you all!"  Then the elevator dropped.  He wasn't thrilled, but he survived. 

We sent Daddy and Kam to Cali Screaming one more time while I took Owen on some mild rides in Bugs Land to finish off our trip on a good note.  It was a perfect ending to our trip, although we were all grouchy and tired walking to our car the last night. 

Highlights of the trip... Owen ate a million of those chocolate caramel dipped pretzels with tiny M&Ms.  Kam liked the Mickey cake pops with marshmallow ears.  Both kids loved pin trading!  Owen likes the beach much more than the crowds of Disney.  Disney in December is much more magical (and cool), than Disney in October.  I think we will be back in 4-5 years.

The next morning we slept in, jumped in our car and headed home.  Grateful that we followed our trip up with a week off for Fall Break! :)