Meeting Kap

Summer is nearly over and I can't help but feel like it's ending way too soon. I had so many plans that we didn't even get to. But we had a lot of fun; we swam a lot, went to Camp Taylor, to Portland and Seattle, we hiked, spent a ridiculous amount of time at the beach. By all accounts it was a great summer, but it just flew by.
We were able to put Josh's heart somewhat on hold this summer, meaning no major appointments or tests. Just a couple blood draws and phone calls did the trick.

People ask me regularly how Josh's doing and often the answer is 'great!', but there are always those random days that make me wonder.  In general, he's is doing well but he's struggles with fluid retention which has been a reoccurring theme over the past 4+ years.  Fluid retention is really a nuisance, it is very hard on his liver and backs his whole system up. In the past he's wound up in the hospital to help him over the fluid hump, but this summer we've been tweaking his meds here and there from home (following dr's orders of course).  Hopefully we'll get it right at home so we can avoid a hospital stay.

But on to more exciting stuff...
Over the summer our family spent a long 4th of July weekend at Camp Taylor and made many wonderful friends and memories.  It was such an amazing experience for Josh and the rest of us. I felt it healed wounds we didn't know existed. Our mentor, Kenny, was a perfect match for our family and we've stayed in touch with him regularly since camp. What a wonderful example he is to Joshua.

The folks at Camp Taylor were in touch with us last week and asked us if Joshua would be interested in attending a 49ers practice then meet Colin Kaepernick!!
Anyone who has met Josh (or has seen him, or has seen a picture of him) knows that Josh is a faithful 49ers fan and a huge Kaepernick fan!

So we jumped at the chance to make his dream come true.
You never know how these things will go. It could be Colin addresses the crowd with a "Hello, thanks for coming", or he could just nod at them as he runs into the locker room, etc.  I played it down a bit so he wouldn't be disappointed.

Well, turns out he was anything but disappointed! Colin greeted Josh by name (he had a name tag), he talked to him like a buddy. They shared a nice conversation, all while looking him in the eye and calling him Josh. He truly made Josh feel so special. My heart is so full knowing that his hero isn't just a football star, he's a caring, generous person who took the time to make difference.  I love him even more now!

Josh wrote Colin a little letter. He thanked him for having him out to practice, invited him to his birthday party & asked for his phone number. Ha! Kap was so nice to his little fan.

Everyone involved in this special evening was phenomenal; from the staff at Camp Taylor, to the players, the coaches and the Kaepernick family. All terrific people who are making a meaningful difference.

I don't have fame or fortune but I sure hope I can somehow give back in a powerful way, some day.
For all of the difficulties and hardships he's faced, this really does soften things and it brings so much joy!
I know this will never be read by anyone involved but I'm throwing my gratitude into the universe, saying thank you! Thank you!

February Update

I really need to be better about updating this blog.  There is so much more to Josh than this silly heart defect, yet it seems to be all I take the time to write about.
Josh was seen at Stanford again today.  At last report we (along with the doctors), decided that we weren't quite ready to list Josh for heart transplant.

Josh was scheduled to be seen next week but his appointment was moved up a week because he'd become symptomatic.  For whatever reason Josh had been waking up at the crack of dawn and throwing up.  This went on for several weeks which prompted his appointment to be moved.
The timing of these episodes seemed really curious to me since his other episodes have always been after eating, or after taking his meds.  I thought to myself one morning as I was in the bathroom with him that my stomach didn't feel so good either.  That's when it hit me that perhaps Josh was confusing hunger pains for a sick tummy.  Poor kid has had such a hard time with his tummy over the past year or so, suffering from terrible vomiting spells.  Anyway, it's become the norm that he throws up for a multitude of reasons, so in my mind I thought maybe he was experiencing these early morning episodes due to hunger pains, not his heart.  Consequently, I have been putting a baggy of Goldfish next to his bed at night and when he wakes up in the morning and his tummy hurts he eats a few crackers & so far so good...it's worked (no more morning sickness;)!
Now obviously this little trick doesn't work for all of his episodes, but it's an incredible relief to realize that it wasn't necessarily his heart this time.
With that said, Dr. Kaufman agreed that these episodes likely weren't heart related since nothing else has declined for Josh.  His activity level is still high, he's still able to do everything he enjoys doing.

In addition, Josh has grown a bit!  At last check up he had lost weight which was very concerning.  This time he gained 2lbs...2lbs!  He also grew a half an inch which is awesome.  Dr. Kaufman said that the line on his growth chart actually moved diagonally instead of horizontally. Great news.
Finally, she told us that there was nothing new that's concerning on his echo.  In fact, there was some slight improvement with his leaky tricuspid valve, and she couldn't detect a murmur when she preformed her physical exam.
Overall, we walked away with a lot of happy news.  It feels like it's been a while since we've gotten good news as opposed to not-bad-news or flat out bad news, so this was unexpected and wonderful.
The piece of not-so-good news we received was that Josh's antibodies are pretty high.  So this has some implications when it comes to transplant.  There will likely be regular infusion treatments needed prior to transplant, but we'll cross that bridge when we get to it.
We'll continue to been seen every 3 months at Stanford and every other month at Kaiser because unfortunately Josh isn't in the clear, nor will he be.  But for the time being we are really happy to have a few more months enjoying life as we know it.
As always we are really grateful for all of the love and support we constantly feel from family and friends.  I don't know what I'd do without that support, and especially the help I always get from my dear friend Betty who is always there for me no matter her personal circumstances.  Though I'm hundreds of miles from my nearest sister, she makes me feel like I have a sister down the street.  I'll always be in her debt & consider myself very fortunate to have her.

In other Josh news, here are a few other fun pictures from the past couple months:

    

PreTransplant Evaluation

Today was Josh's big day at Stanford.  We had appointments scheduled from 9am all the way until after 5pm.  We met with various transplant specialist and learned a ton.
It's an interesting process because in some ways I realized it was almost like a job interview, they are making sure we as a family are right for transplant, just as much as anything else.  We spoke with social services, a nutritionist, two ladies from psychology, nurse practitioners and our primary cardiologist.
While it made for a long day it was just what I needed to really understand the process of transplant.   As I said in my last post it's not at all cut and dry and there was quite a bit to discuss with everyone we met with today.  We had a great discussion with our cardiologist, she's wonderful and she really took her time with us.  She is confident Josh will have a favorable outcome, and she made us feel so much more at ease.
With that said we discussed Josh's current quality of life, which is really quite good.  His worrisome symptoms from just a few months back have really improved.  She seemed to lean towards recommending holding off listing Josh for transplant briefly, but keep a close eye on him.  When he becomes symptomatic, or has a decline in function we'll have him listed.
Stanford has a council that meets and discusses potential transplant cases.  The council is made up of the clinicians we met with today, and the entire transplant team (there may be more people involved, but I know these people are there for sure).  After they discuss our case next week the team will make a decision as to whether or not Josh is a candidate.  There are several reasons why one would not be a candidate, but we were (unofficially) told that they saw no reason he'd be ineligible.   So we're pretty sure when they get back to us they'll suggest we watch him closely and meet regularly.  But it's possible they will feel the timing is right to list him.  If that's the case they'll also let us know what status they decide to list him.
Status 1A is reserved for the sickest children who are hospitalized and on specific IV drugs.  1B is for those who suffer from poor growth due to their failing heart.  Status 2 is for those who are less critical  and finally status 7 is kind of a holding status for people who have been on the list but may have become ill or are currently not in good shape for a new heart (perhaps they have the flu), but they return to their original status as soon as they are able.
On that note we realized today that Josh lost a half a pound since his last visit in September.  It's never good for a small child to lose weight.   They are assuming it's because he's been feeling better and has been very active.   He's really had poor growth for a few years now which leads me to believe he'd likely be listed as 1B status.  The higher the status the shorter the wait for a new heart.
But I don't want to get ahead of myself because it seems like we'll get a few more months at least until he's listed.
Overall, Jon and I walked away feeling some relief.   From everything we learned it's going to be a very difficult and lengthy journey.  But we have more confidence now.  It feels like everything we've experienced prior to this point has prepared us for the road that lies ahead.
So we continue to take things one day at a time, and appreciate every one of those days.

(this is his drawing of Kaepernick....but I'm sure you could tell;)

Heart Update

Today I took Josh in to see his cardiologist at Kaiser.  She's really good & it was nice seeing her return from maternity leave.  Since she referred us to Lucille Packard we see her a little less frequently because we're also seen at Stanford's clinic.  I think we are averaging monthly visits between both centers.
Lately, Joshua's symptoms have improved so this whole process of pre-transplant is a little hard to swallow since he's doing seemingly well.  Today our doctor told us how very fortunate we are that Josh is doing so well on the outside.  We've heard that often.  She said with a little laugh, "Ya know, this is not typically what high Fontan pressure looks like."

After talking with her and telling her it felt a little strange going through all of the transplant prep when he is thriving, she explained in great detail the ramifications of his test results.  She referred to it as the the "silent threat" that lies within his little body and explained what it could potentially mean long-term, not only for his heart, but also for his lungs.  None of this was new but it was good to be reminded again that there are some serious issues...I so easily forget.   I think forgetting is how I cope.
This whole transplant process is so much more complex than anyone could imagine (unless you've lived it).  It's not cut and dry, there are no clear answers.  It leaves us as parents with a terribly difficult decision to make, a life-or-death decision really.  The stakes are so high that I'd much rather run and hide than make a decision that could have a devastating outcome.  But that's what we have to do.
Anyhow, besides having a good long talk with our cardiologist, there have been no significant changes with Josh's heart.  It's holding steady.  While I'd welcome a miracle right about now, I'm incredibly grateful that we didn't walk away with any worse news.
So now Josh has officially done all of the necessary preparatory tests, we'll go to Stanford next week and get the transplant ball rolling.  Hopefully we'll walk away feeling like we are doing the right thing & if not, we'll reassess.  We can always reassess.
In the mean time, he's feeling good, he's active and he's happy.  That's all we want for him, so we're happy too!

(side note, isn't he the most handsome? Liz Perryman Photography took our family photos this week...I'll share more when I get them.)

Birthday fun and Ninersmania!!!

Josh celebrated the big number 7 last week and had such a great time!
It was like fate that the 49ers Youth Football program came to our school and put on a training camp for "7 and older" 2 days after Josh turned 7!  The stars aligned.
The training camp was such a blast for the kids and Josh was such a little stud out there.  I think since he's about the size of a 4 year old people just don't expect too much out of him, but he so coordinated and has so much agility he surprises everyone!  It was a really special day for Josh to be a part of an official 49ers event because he's a huge fan!
It was kind of funny, when the Niners truck pulled up all of the kids raced over to it & they all expected Kaepernick to climb out of the back.  These kids were more excited for this truck to arrive than they would be if Santa pulled up in a sleigh full of gifts....really!

It was so good to watch Josh run and play football with a huge smile on his face, without a care in the world.  It was as if all his dreams came true that day.  I couldn't help but feel so much gratitude for the 49ers program.  Watching him just be an ordinary kid (with some crazy good football skills:), I thought back to our visit earlier that week at Stanford.  As I watched my boy laugh and throw passes and I had so much peace knowing that despite his heart and the fact he must feel pretty yucky inside, he doesn't let anything stop him from enjoying his life.  He's such a good example.

Now onto his Birthday...we went to my parents house this weekend to celebrate with family.  Since Josh is a huge Niners fan he of course wanted a Niners party.  He had so much fun playing football with his uncles and cousins.  He was a lucky boy because we were connected with an organization called Icing Smiles.  Icing Smiles put us in contact with an amazing baker, The Cake Boxer, here in San Francisco.  The baker created an amazing cake for Josh!  It was definitely a highlight of his birthday!

People ask all the time how Josh is doing.  Overall, I have to say he is doing well.  His vomiting has lessened (only about 3-4x a week) and he's in good spirits.  If you read my previous post you know he's not doing well on the inside.  But it sure goes a long way when his quality of life is still good.:)