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*

    

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!