May

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*

    

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.)

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 game...tickets 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!"...you 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!

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.:)