Bumble Bee Ranch 2012

We were so excited to go back to Bumble Bee Ranch with HopeKids this year!! It is our favorite HopeKids event and look forward to it every year. This was our third year going and it was just as fun as we remembered it! You can read more about our past visits here and here.

The drive up the ranch is relaxing and the desert is so beautiful. We got there just as it started this year and started with the famous old time pictures. I have these from each year and love them so much!

Then we hit up the bounce houses before the crowds arrive.  Owen doesn't know how to jump yet, so he just flips around and sits in one spot as everyone bounces him. 

Kam bounced him for at least 30 minutes and let him wrestle with her. 

When the crowds started arriving, the bounce castles get crazy and we peace out.  My kids were both so excited to do archery.  I'm thinking their sudden interest in "bowd en arrows" has a lot to do with 'The Hunger Games' and Katniss Everdeen.  Kamryn rocked it and hit the target everytime! 

Owen didn't do too shabby with a little help from Daddy!  They have both asked for the Easter Bunny to bring them a "Bowd en arrows"... not gonna happen.  I told them they can save up all their money and buy one themselves.

It was time for the great ranch cookout, but first we wanted to jump on the Hummer Tours before the crowds.  Last year we waited a while to get into a hummer, but it was so worth the wait.  This year, we jumped right on and off we went into the desert! 

This is Owen's favorite part of Bumble Bee!  He loves the bouncy ride, driving through the creeks, up the boulders and on the steep trails.  The giggles are insane and the driver was thrilled to have such an enthusiastic passenger.

We got back to the Ranch and chowed down on some burgers, dogs, chips, and other goodies.  The kids stopped at the craft table as it started warming up outside. 

We ran into so many of our heart friends whom I love so much!  The heart community is amazing and I have made some amazing friendships along this journey.  I wish I would have taken pictures.. what was I thinking?  Anyway.. it was getting hot and the kids were tired so we stopped for one last photo on our way out.

Next year we will try out the rock climbing wall and they had a way cool barrel bull to bounce on.  Horseback riding will probably never happen again with my kids.. they aren't fans.. so we got to skip that this year.

Owen was so exhausted when we left that he passed out before I hit the dirt road. 

We had a fabulous time at the Ranch and I just want to give a shout out to Bridgette and HopeKids for putting this on!!  We are so grateful for this amazing organization and for all they do for our kids.  We can't wait to go back next year!!

Everyday Normal

I have been so overwhelmed with the medical stuff, that I just wanted to document our everyday normal.   Our mornings are so crazy getting breakfast made, lunches packed, showers, and out the door by 8:20.  We drop off Kam at school and after a goodbye kiss.. it's just me and this silly boy. 

I know it's a naughty vice, but I stop at Sonic entirely too often and pick up my morning Diet Dr Pepper.  I blame this horrible habit on the school being around the corner from Sonic and the fact that they added a morning happy hour.  I don't drink it all on my own.. Owen helps a momma out.

As soon as we get home, we usually have about 30 minutes of calm before therapies, errands, and Owen needs his meds.  I always light a candle to get rid of the breakfast smell and clean my kitchen. I can't stand a dirty kitchen, floor or dishes in the sink.  Owen either helps me out, or he plays with his toys while watching Curious George on pbskids.

After meds and his morning tube feed, we have therapy three days a week.  The other two days, we get started on his "preschool time".  This consists of workbooks, drawing, crafts, or just practicing writing letters.   He is doing fantastic and is going to be totally ready for Kindergarten in another year.  His favorites are mazes, connect the dots and drawing the missing objects in the pictures...like the monkey missing his tail and ears in the picture below.

He doesn't like to write his letters, but we do it anyway.  Just this week, Owen has started showing his 'perfectionist' side.  Daddy and Kam do everything slowly and perfectly!  They don't like to make mistakes and Kam likes things neat.  She will redo an entire math assignment in order to get the numbers perfectly in the graph paper boxes without a billion eraser lines.  I am the opposite and will usually do everything as fast as possible, just to get er done, mistakes and all.  Back to Owen.. I always assumed he was going to be just like me, and he squashed that idea this week.  He was so particular about staying the lines, gluing the cut outs straight and re gluing where the edges were lifting off the paper.  This mama needed some serious patience. :)

Oh and we finally conquered the concept of rhyming!!  I would say Bat rhymes with Rat...and he said.. "no mom.. that's a MOUSE!! Bat does not match (rhyme) MOUSE!"  Sigh. 

He has a pretty good attention span and we can spend at least 30 minutes on "preschool time" before we move on to PLAY TIME!!  Owen loves weapons, superheros and fighting.  I wish I got paid for each dart I pick up on a daily basis.. I'd be a millionaire!  He loves his darts and dart guns and shoots them at everything!

He also likes to have me help him set up his train set or buildings and then he uses his "villains" to destroy what we built and then he gets a superhero (Spidey or Captain America) to come by and fight the Villain off.  Then we rebuild and do it all again!  I love watching him play and this is when I get my facebook, blogging and emails done.

Today, he wanted to fight with ME.  He loves to fight!  So I hid behind the couch and I was the Mommy monster.  He would come around the couch and attack me and I would pretend to beat him up and we would throw down.  I got my butt whooped as always, but it was totally worth it!  Last night I was the blanket monster and had the blankets over my head in bed.  I was getting taken by my 4 yr old and then Kam joined in on the action.  Oh the giggles that came out of my kids were priceless!  I am convinced that Kam will never be too "cool" for me.

After fighting this morning, we ate some lunch and then Owen wanted to play Wii.  I needed the break just as much as he did.  Look how zoned he is.  He was Obi Wan defeating the Sand People in Star Wars... it's tough business.

I just took this photo of my family room.  Proof that he is having fun and making memories.  It'll get cleaned up as we are running out the door to pick up Kam from school.  She usually walks in the door, asks for a snack, tells me all about her day and says.. "what do you guys do all day?"  Ha!

Evenings are just as crazy.  It's homework, dinner, dance, and dishes.  Then we all settle into our own worlds until we drift off.  Kam can be found listening to her iPod snuggled into bed.  Owen is in his bed playing iPad.  Daddy is on his computer in the den or snuggling me in bed and I am zoned out watching some well earned tv time! 

This is our everyday normal and I wouldn't change it for anything.

Owen's Cardiac Plan (as of today)

My head has been spinning as I load up on research about possible cardiac outcomes for Owen.  My main goal is to give him the best quality of life possible.  The results from his most recent cardiac catherization shows his pressures to be too high to qualify for the last staged palliative surgery for his single ventricle anatomy. The biggest issue he has is his tricuspid valve stenosis and regurgitation.  Owen has already had two valve repairs and the final consensus is that it isn't going to get any better.

I spoke with Dr Stock at Owen's cardio appointment today about "options".  I hate to compare Owen to other kids dealing with HLHS, but the reality is that he is one of the "sicker" ones.  Kids with the Glenn (2nd staged palliative surgery for single vents), are not meant to live into their teens or adulthood.  The circulation is not ideal for growth and he just isn't getting enough oxygenated blood to his lungs.

When I posed the question to our team at Stanford about the age of their Glenn patients, I was told the oldest they see are in their older single digits.  If they don't qualify for the next staged surgery, they move forward with transplant. 

I get asked all the time.. Why not just move forward with Transplant?

Heart transplantation is not a cure all.  It is taking one heart defect and replacing it with another.  Heart transplant patients are always at risk for rejection, cancers and coronary artery disease.  The way I have heard it put is "it's like placing a ticking time bomb."

Owen is also at higher risk of rejection due to his high PRA levels.  His antibodies are highly sensitized and when listed for a heart, his antibodies will cause voids on his listings.  So not only will he need a blood type "B" heart, but he can't accept from 60-80% of the donor population.  That significantly decreases the number of donor hearts.

If that weren't tough enough to digest, Owen is getting to an age where finding a heart is the most difficult!  They match donor hearts to the size of the recipient.  Owen is getting too big to accept a donor heart from a small baby or toddler, but it too small to accept a donor from an adult.  There just aren't as many school aged children that have "accidents"... which is just so hard to even write. 

Each week, the cardiac team at Stanford meets to discuss individual cases.  Owen was discussed at last weeks conference with a group of 40 cardios and surgeons, including Dr Hanley (Owen's surgeon).  They unanimously agreed that Owen will most likely never become a Fontan candidate.  Even if he were to find a way to "squeak" by with a successful Fontan, which they don't foresee, the post Fontan quality of life would be difficult and short lived. 

With that said, they are moving forward with discussing him at Transplant conference in the next two weeks.  Their concern is that Owen is maxed out on heart failure treatments at this time.  There is no additional medications or oxygen therapy that can be used that he is not already on.  When, not if, he starts to decline, it will be quick and time will be limited.  That was no surprise to hear, but considering the information I just listed above, we don't want to waste valuable time. 

The main topic of discussion is going to the right time to list him for a heart.  They need to discuss frequency and timing of IVIG treatments to help get his antibody levels down.  They need to discuss the option of letting us wait for a heart in Phoenix with medical transportation available to get us to Stanford immediately if a heart does become available.  They need to discuss when they want to see Owen next for followup.

On the upside.. Owen continues to do better than ever!!  I really hope we can get another year or two out of his existing heart, but don't want to run out of time and options.  Do we get a second opinion from Boston Children's or CHOP regarding his Tricuspid Valve?  Do we discuss PRA's and transplant with other centers?  I have full trust in Stanford, but when discussing life or death options about my son, I really do want a "You have exhausted all options" from another top cardiac center as well.   A simple.. "we agree with the path you are taking.."

We are so grateful for the three additional years we have had with Owen's existing heart.  When I look back to early 2009, we were pursuing transplant at UCLA and Owen was already undergoing antibody treatments.  If it weren't fro the 2nd opinion obtained from Stanford, he wouldn't have had these three extra years with his heart.  I won't give up the fight to get all the information I can to make the right decision for Owen. 

All your prayers and "good vibes" over the next couple months are appreciated. Big decisions will be made from both our team at Stanford, obtaining a second opinion and that we will find the best treatment for Owen moving forward. 

Thanks for all your love and support over the last four years!! It has been such an amazing journey and we are so blessed.