Monday, May 23, 2016

The latest...

So much that's happened since I last posted, thankfully, there's nothing negative to report, just a general update of the past 9 months. How terrible of me to have let 9 months pass without making a single update to his blog. But in my defense I taught full-time 2/3 of the school year. So at least there's a good reason for me to have gone MIA.

Josh is nearing the end of second grade. Overall, it's been a much better experience than first grade had been.  I realize school will always be a real challenge for Josh. Part of me wants to just check-out of those worries. That may sound awful but If I'm totally honest, I want his childhood to be fully of joy, new experiences, learning, growing. But school these days is so stressful and highly demanding. I know that's all a part of growing up, but for Josh, growing up already includes more stress than any child should have to bear. Maybe this is just end of the school year angst talking. We are really ready for summer break (if that isn't clear)!

In other news, Josh has been such a stud on the baseball diamond again this season. I'm so proud of him. He's one of those kids who is always giving 110%. He plays the whole darn field, makes so many incredible plays, he's just a boss out there. Baseball brings out the best in him and he has another great coach this season who really helps him flourish. He's has great sportsmanship, he's a leader, he's a stand out - all the way around.  I love that he goes out there, gives it his all and no one knows about his heart, he's just another kid.
(Disclaimer, yes - his coach knows, however spectators and teammates often don't know.)


Here's the latest heart update: As it stands right now, Josh is still a candidate for transplant, but for the time being his symptoms that had been very concerning before, haven't been an issue lately. So the plan remains the same with the heart failure team at Stanford...keep watching closely.

Also worthy of posting, last week Jon got his hands on some Warriors tickets and took Josh to a playoff game! It was a dream come true for Josh. I was demanding pictures from Jon the whole time because I knew how much the game meant to Josh. This picture right here says it all.

So there you have life altering news to share, but that's a good thing. We will be meeting with Endocrinology again this week and we'll see where what their thoughts are about Joshua's growth. He's still a just a little guy and hasn't had any significant growth for a few years now.  Maybe I'll have some news to post on that front soon. Also on the horizon, we'll be going to Camp Taylor again this year! Cannot wait for that fun!!

That's all for now!

Wednesday, August 19, 2015

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!

Wednesday, May 27, 2015


A few weeks back I took Josh to see his Kaiser cardiologist in the city.  He sees her every other month and he's seen at Stanford  every other month - so he's seen monthly between the two.  When we went to Kaiser his doctor showed me his growth chart and pointed out that in a full year Josh hadn't gained any weight.  They call that failure to thrive. She explained that more than just his body is effected by poor growth, his brain development can also be effected by insufficient calories.  Calories have never really been the problem with Josh. He's willing to eat & really never stops eating all day. But that darn heart of his is working overtime and takes so much energy to function.  Of course the discussion lead to transplant because that's generally the next step in the process when a child (with a very sick heart) has completely stopped growing.
This information didn't sit very well with me. I was really worried and anxious to visit Stanford last week, but it went surprisingly well.  According to their scale he's gained nearly 3lbs over he year (which is not great), and they felt like that was acceptable.  At Stanford they base much of their decision regarding transplant on my opinion of his quality of life and activity level.  
I spend 4 days a week at Josh's baseball field watching him run and play alongside healthy active boys. I don't think anyone would pick Josh out of the crowd as a kid who has a failing heart, I just don't.  Honestly, if he didn't have those 8 hours on the field that I get to see him being extremely active I might question his well being.   His doctors were very pleased and surprised to hear that he's able to keep up.  They continue to encourage us to focus on high calorie nutrition but other than that they are happy with the way things are going.  
Josh has also started going to therapy and we are very hopeful his anxiety will improve.  He's really struggled the past few months with anxiety and has voiced worries about transplant.  Transplant is a new-ish idea for him and he goes in and out of phases when he's quite fearful. 
When he went to the ER about a month ago he was wheeled through the hallways to get several tests.  As many of you know,  ER hallways are lined with beds of people who are sick.  I don't mean to be insensitive in the least, but it's a very scary sight for a little guy.  He saw people that night who looked like they were really suffering (and or possibly dead) and it terrified him.  He's mentioned he doesn't want to go back to the hospital because he's scared of those people.
I think it has really contributed to his anxiety, among other things & I'm hopefully his therapist will be able to ease his mind. 
I'm really grateful he's had baseball this season because it's a time when he has no worries.  He's able to go out there and just be a kid, it's been a huge blessing.  He's got amazing coaches who treat him just like all the other boys.  He's not handled with 'kid gloves' they treat him and all the boys like men (seriously!).  I think signing him up for baseball was the best decision I could have made for him. 
He's always been really into baseball since he was just a little(r) guy.  His love extends beyond the little league field.  He's naturally been a fan of the Giants forever, but given his experience playing on a team of his own the flames of his passion have been fanned.  If he's not playing baseball he's watching Giants highlights.  It's the same 2 videos he watches over and over and over. I think the whole family falls asleep with the songs from these videos playing on repeat in our minds.  He's a passionate kid.
I took my kids to a Giants game a few weeks back and we had such a good time.  Josh has been to a few River Cats games in Sacramento which he loved, but he'd never seen his Giants in person.  He turned to me, sitting at nearly the top row of AT&T Park, and said with all his soul, "Mom, this is a dream come true." It was perfect.  We are headed back to watch another game this weekend.  It's Little League Day at AT&T Park, so it's bound to be a special day!

*I have no idea why their are links to adds in this post, my apologies*

Friday, March 20, 2015

1st Grade

At the beginning of the school year I put in a request to get a little extra help with Josh's school work through a tutoring service. It took quite some time to get the ball rolling on it, but last week he finally had his first session.
We've felt very lucky through all of our experiences with Josh that there haven't been any developmental delays. However, first grade has been a difficult on for Josh. There seems to be some sort of disconnect that we haven't experienced in the past.  He did quite well with Mrs. Marinez in kindergarten & she assured us he's a regular old kid, nothing to worry about with him (she's been teaching more than 40 years, so I trust her judgment).  But this year just hasn't been the same and I can't pin point the problem.  I spend a lot of time with him each evening reading, helping him understand his homework, but even with that I feel like he's having some trouble retaining what is being taught.  I also notice he has a hard time maintaining focus. First grade is much more rigorous, and it's just been hard to adapt.
Thankfully, he's really enjoyed his first two sessions with his tutor.  She's been very encouraging and Josh responds well to her personality.  I'm really hoping that this extra help will allow him to catch up to where his teacher feels he should be & most importantly to build confidence in his ability to learn.
In addition, I have been have recently reached out to Stanford's department that advocates for their patients with educational needs.  I look forward to any advice/help they can provide to give him a little boost as well.
I know many of you who read this blog have kids similar to Josh so if you have any advice I'd love to hear it!

Lastly, here are a few pictures from opening day & Josh's first game...

(I can't stand how cute these little boys are in their uniforms!!)

Okay, one last thing...A dad from Josh's team approached me and mentioned he heard Josh may have some sort of heart issue.  I began to tell him a little about it and he asked "Is he a hypoplast?"...immediately I knew this guy was familiar with the heart on a medical level (hypoplast=doctor talk).  So he goes on to tell me that he was Dr. Azakie's perfusionist (the guy who hooks the patients up to the heart-lung bypass machine) during open-heart procedures.  We realized together that he was in the OR for all of Josh's major surgeries. How crazy is that? He couldn't believe that Josh was post-Fontan. He said, "You just don't see kids running around like this post-Fontan!"  He said he was going to call Dr. Azakie to tell him because he could hardly believe it.  That's how we feel too, Josh is a special kid. 

Monday, March 02, 2015

Spring Training

I'm happy to post about something unrelated to the heart.  If you've even glanced at this blog you likely know that Josh is a sports fanatic.  He spends every second of his day (outside of the classroom) playing sports.  Or if he has down time he's on YouTube watching highlight reels.  He's so knowledgeable it's mind blowing.  Anyhow, a couple months ago we signed Josh up for Little League hoping he'd be able to keep up & play with the team that consists of 1st-3rd graders.   He's just a first grader and a very tiny one at that.  But he's got great coordination and he's naturally very good at sports so we *hoped* he'd be able to play at this level without any problems.

So far it's been really good.  He's had maybe 6 practices and a scrimmage and I tell you he's really impressed us all.  His fielding skills are pretty incredible.  His coaches (who are wonderful!) have him playing mostly 2nd base.  He really enjoys it and he's been practicing a lot outside of team practice.  He really studies the position and knows just what to do when the ball is hit to him.
He's so focused and determined, it's so much fun to watch.
Because I never want to forget I wanted to write down some of the highlights from his first scrimmage.  It just so happened that he was playing his best buddy, Darius' team.  That was a fun surprise!  Well Darius isn't really a 'boy', he's a big, strong athletic guy, the kind with more talent than any one person should be blessed with! Darius and Josh have been best buddies since the first day of Kindergarten.  I know that Darius is looking out for Josh at school when I'm not there.  These boys are really tight.  Anyway, Darius was up at bat and his swing makes your heart race, it's not a little league swing, I'll tell you that! I felt a little nervous for all of our boys because when Darius connects that ball flies and fast! This particular at-bat when Darius connected with the ball it went straight to Josh who was playing second, he caught that ball on a bounce and threw it to first base before I could blink! It was a beautiful play & everyone was shouting to Josh telling him what an awesome play he made.  That catch was incredible.  It was really fun to watch! I don't think Josh thought much of it other than being excited his buddy hit it to him. :)

Another highlight (& this may be the highlight of Josh's life) was when Josh hit an in-park home run! He connected solidly with the ball and made it easily to first. But the ball was over thrown to first & he was coached to run to second & then third and then home! It was so cute watching him. At every base he threw his hand up and celebrated.  Jon told him he needs to save the celebrating till after he scores and that "a tip of the hat will do", ha!
Anyway, we are really enjoying this season with Josh feeling well enough to tear it up on the field.  We don't know how long it will last, but it sure is fun to watch!

Monday, February 09, 2015

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'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:


Thursday, November 20, 2014

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;)

Friday, November 14, 2014

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.)

Tuesday, November 04, 2014

The Best Day Ever!

After Josh attended the 49ers Training camp I wrote a 'thank you' letter to the program director.  She was very touched hearing Josh's story and asked if it'd be ok if she nominated him for their 'Champion of the Game' program.  She explained that it was a program for children who have faced difficult challenges and did so like a champion.  She told me if he were selected he'd be given tickets to a home for our whole family!
This was the best news I heard in quite some time!!
Shortly later we were notified that Josh had been selected as the 'Champion of the Game' on Nov. 2!!  We could hardly believe the news & could hardly stand the wait!

Sunday was our big day...November 2nd!  Let me just say, it was an experience we will never forget & exceeded our expectations.  The stadium itself took our breath away.  Our seats were awesome & we had access to the Yahoo Fantasy Lounge, which was beautiful! There were no lines to wait through, for the private bathroom or for food...we felt so VIP!!

After being escorted to our seats Josh quickly spotted Kap, who he LOVES!  He really enjoyed watching them all warm up, I think that was just as cool as anything else!  Did you know Jim Harbaugh still has a really good arm?  He and Kap would take turns throwing long passes to the other players & I have to say I was really impressed by Harbaugh!!  Another player Josh really loves is Frank Gore...he was really excited to watch Gore in action.

We had a great view and thoroughly enjoyed every minute of the experience.  The times we'd normally be screaming at the ref on TV, we just smiled and said, "Too bad!" know your having fun when horrible calls can be brushed off!
It was wonderful & we are so grateful to the 49ers organization for making a dream come true for Josh (and the rest of us!).

Go Niners!