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*