Happy 8th Birthday Owen!!

This incredible boy is celebrating his 8th Birthday today!!  What a miracle and a blessing!!

Owen has a BIG personality.  He is funny, smart, witty and has a kind heart.  He loves to play quietly and enjoys having his own space to imagine.  He will play in his room for hours with Legos and comes up with the best "creations".  He is an Encyclopedia for all things Superheros and wants to become a scientist so he can create "potions and cures."  He loves watching YouTube videos and has been begging me to create a YouTube channel for him all year.  He is reading really well but given the choice, it's the last thing he'd choose.  He can play video games for hours and loves playing with his cousins.  He loves to snuggle and have long conversations.. I often hear him talking Kam's ear off at night when they are supposed to be asleep.   If I had only one word to describe Owen it would be Brave!  No matter what challenge he faces in front of him.. he puts on a brave face and he Conquers. 

Here is a recap of the post I wrote last year... Let's take a walk down memory lane. Look at this little peanut.. born with half a heart and ready to fight.  Who knew that he would be thriving, with a strong new heart, celebrating his 8th Birthday!

His first year was intense full of unknowns.  Two open heart surgeries, 3 cardiac catherizations, transplant evaluations, oxygen, 24/7 NG tube feeds, therapy 3x a week...

At two he was butt scooting around the house, manueving around his oxygen tubing.  We ditched his NG tube and had a Gtube surgically placed.  Owen started being treated at Stanford for heart failure and we had a couple more caths this year.  He was talking up a storm and such a stubborn little spitfire!

By three, we finally had a walking boy!  He would say the silliest things all the time and we knew he was trouble. We told him to bring it!  Owen had his third open heart surgery at Stanford to repair his Tricuspid Valve, another couple cardiac caths and we continued to talk transplant. Owen wrapped up his year with his Make A Wish trip to Disneyworld!

By four, we knew Owen was having a tough time keeping up, satted in the low 60s and was listed for a heart transplant.  He had a great year with many ups and downs, but such a tough guy!!  He continued to work hard with PT, OT and Speech therapy weekly and always impressed us.

Owen's fifth year has been the year of change.  He received his heart transplant in July and has thrived ever since!!!  When we look back at the first part of his fifth year and compare to the last half, we are so grateful for this amazing gift of life he has been given. He had started Kindergarten with a homebound teacher, learned to jump on the tramp, and improved in every area of development.  It's like he is a new boy!

Six has been the year of transformation!!  Owen has physically, emotionally, cognitively.. every area has changed for the better.  He is growing like a weed (finally)...he started 1st grade..he is running (almost), jumping on the trampoline (getting air)..wicked smart in math.. his writing has improved so much.. he is reading (when he has to).   He is happy, smart, funny, and such a delight to be around!  He no longer has hulk rage and his teacher says he is the most obedient, kind boy.  Even with a bajillion biopsies and trips to Stanford, you always have such a positive attitude.

Owen's 7th year started off a little rocky.  I know your biggest goals were to make it to 2nd grade and to finally ditch your Gtube for good.  You have done amazing with second grade at home and the gtube will have to stay a bit longer. We are so, SO proud of you!!!  I hope you always remember how brave you are and what you have overcome as it has molded you into the incredible boy you are today! 

Thank you so much to Aly's family.  We love you, we pray for you often.  The gift you have given Owen, the gift of life, is celebrated today and always!

Park Play

Sorry I haven't had time to sit and update.  Owen has had lots of labs this past week but we got the go ahead to stop the Lovenox injection.  I think we were all thrilled, but Owen said "you were just getting good at it too." There is five days worth of bruises on his little legs from the shots and my heart goes out to all you heart mamas that have had to do these shots for extended periods of time.  Brutal!  We have been soaking up the amazing weather and spending time at the park.  Owen loves to roll down the grassy hills and comes home exhausted.  He was finally back at Gymnastics this week for PT and kicked butt!  He is working hard with his teacher every afternoon at the house and is catching up on things he missed last year.  Also, we just got word that Owen was approved to have a therapist come to the house for play therapy which I'm pretty excited about.  All good things!

I have been talking to his team at Stanford often and they are just waiting on insurance approval to start the process of the new transplant evaluation.  We aren't listing him anytime soon unless something comes up. 

Owen is counting down the days until his 8th birthday... so exciting! 

We had a little party for Kam and Owen with Carson's family last week.  I found these photos on Kam's phone.  I don't think she reads the blog so I'm safe in posting them. :) 

Kam danced with her High School team at the basketball game on Friday night.  I felt awful because I totally missed it by like 15 minutes.  She is getting ready to start choreography for their spring concert.  The sophomores are meeting with their counselors in the upcoming weeks to prepare their schedules for next year.  Why does it fly by so fast?  She has a full load of AP classes next year and her senior year is going to be intense with college level science classes.  She took the PSAT this year and did really well.  Next year she will do some SAT prep classes and I'm sure she will do great on those as well.  She has big plans!

I love our afternoons, after school, when we can just chill on the couch with the boys and talk about our day.  It is so fun to hear every detail.. she has always just chatted my ear off about her long days at school and I will miss it one day.

This little monkey is 13 months old!  At 26lbs and 32 inches, he is just not a little baby anymore.  We transitioned form Formula to milk and he is mostly only taking a bottle at bedtime.  He only takes one short nap a day and the rest of the time he is just all over the place.  He is the most active, cuddly, talkative boy ever.  He babbles all day long and loves to dance!  It's hard keeping him happy and somewhat quiet while Owen is doing his schoolwork with his teacher.  One day he stole my Sonic soda and kept dumping ice on himself.  Over and over again... Kam and I were video taping and laughing like crazy.  So much for keeping quiet.

Seriously... when did he get so big??  He isn't so sure about the sand and playground equipment at the park, but he just runs around and explores.  I promise he has shoes.. super cute Converse high tops sneakers that Daddy picked out.  They are just impossible to put on his feet.  I need to go buy him some practical shoes that are maybe no so stylish, but instead, easy to slip on.

That is my weekly update.  I really should post more frequently because I keep forgetting great things my kids say or do during the week.  I was looking back at posts from 2009 today and was so happy to read posts about things Kam did after school in 3rd grade (yes, 3rd grade!) and to see how far Owen has come.  This is why I enjoy blogging and will probably not stop for a very, very long time.

A Plan (kinda of)

 We made it home safely last night and crashed hard!  Our Tuesday kick started with a 3:30am shot that I had hoped Owen would sleep through.  No such luck.  We both were up for good!  We had an early morning lab draw at Stanford and that was a bit dramatic, but ended with blood.  We made it to Transplant clinic by 8am and it was an informational visit.  We met with our NP, our new Social Worker (since our favorite Social Worker, Mary, finally retired), our new Coumadin NP, nutritionist and then Dr Rosenthal. 

Breakdown...
Biopsy results came back with 0 rejection.. as always! 

We have to look at short and long term treatment plan options.  We know that Owen has Coronary Artery disease now, but it's not advanced and he isn't showing symptoms from it.  His heart pressures are better than they have been in the past 8 months.  With CAD, the heart muscle starts to stiffen and the heart pressures increase significantly, indicating it's time to retransplant.  We also know that Owen is still being treated for moderate dysfunction with heart failure medications and his heart hasn't fully recovered from last year.  His heart rate is still in the 140-150 range and is causing his oxygen requirements to go up and he burns more energy.  We increased his Carvedilol dose to see if it will have an effect on the HR.  Another option we have is to switch up his anti rejection meds to Sirolimus which can help with Coronary Artery Disease, but can significantly hinder healing.  This is an issue if he requires another heart transplant. More on that in a second.  We are already tackling the clotting issue and Owen had another lab draw this morning (three in three days) and we are hoping his levels are close to the target range so we can stop these darn Lovenox shots soon.  He says they burn and his poor legs are so sore.  He just doesn't have a whole lot of fat anywhere on his body to inject.. poor guy.

As far as looking at the longer term...

Stanford is going to go ahead with starting the process of getting a new transplant evaluation done now.  We discussed in depth where we would like to do transplant (here or in Phoenix) and the option of listing at both centers if necessary (if he were to get very sick again).  I think the plan is to be prepared and ready for anything because honestly.. in Dr Rosenthal's words.. it's the unicorn in the room.  We don't fully understand these zero rejection results, low to no antibodies, great heart pressures, but then we have CAD, depressed cardiac function and a serious biopsy negative rejection episode that was so quickly onset. 

I will know more in the upcoming days as the cardiologists, transplant teams and surgeons have time to talk and look through Owen's images. 

I did speak in depth with the nutritionist and we are significantly increasing his caloric goals (currently 1400/day).  I need to pack some pounds on him, or at least continue to attempt to.  If we can't see a significant increase in weight we will do a metabolic test with pulmonology in April when we fly back.

We had some time at the hotel to pack up and book our next hotel stay before heading to the airport. We will follow up in April for an echo and clinic visit but will bypass the biopsy unless he is symptomatic (YES!).  If we do make the switch to Sirolimus we'll have to do a biopsy six weeks after he start it.. which is a bummer.

Owen is over it all!  He has just had a long few days and needs a little bit of a break from it all.  We have a week or two of frequent labs and hopefully the shots will end soon.  Then we will finally get a little break!  Owen's birthday is in two weeks and I know that would be the best gift ever!  No pokes, no echos, no biopsy around the corner... I'm just praying this is the outcome.  I can't believe how brave he is and how much he has endured in his (almost) 8 short years!  Thank you all for the prayers and support.  It is nice for me to have the support of other families that have walked this path before us and can give guidance.  Thank you all so much!!