Friday, May 30, 2014

This week...

Still haven't haven't gotten Josh in at Stanford yet, but we were told it'd take a week or two.  This week Josh needed a lot of encouragement to do things he normally likes to do.  I'm not sure if it's another symptom of poor heart function, or if it's just end of the school year burn out.  His teacher is so good, she's very in-tune with his energy level, his temperament etc.  She keeps such a close eye on him I know I don't need to worry about him while he's at school, because she's so on top of it!  She's been such a blessing.  I swear, sometimes I think we ended up moving here simply because she was destine to be in his life, she's been such a positive influence on him, there are just no words to properly thank her.  This is the first year (of the 5 I've had kids in school) that I kinda don't want school to end...that's how much we love her!
Anyway, besides needing an extra nudge to do things, Josh has also held his chest and said it hurts several times this week.  It hasn't been too extreme, mostly seems to just irritate him, but it makes me more anxious to hear what the specialist at Stanford think.
As I said before, I'm going to do better about blogging so those of you we don't see much anymore can still know what's going on.

 Josh & Sammy with their best buddies:)

Monday, May 26, 2014

Heart update....

On Thursday I took Josh to see his cardiologist because he's been experiencing some new symptoms the past few weeks and we wanted to be sure there was nothing new going on inside that little body of his.   We were lucky to have been squeezed right in & Josh was able to get all of his ordinary tests done, except his pacemaker check which is  coming in a couple weeks.
The results were pretty similar to his previous results, but his echo looked just slightly declined.  Given the new symptoms, Dr. Pererra decided to refer Josh to the Lucille Packard (Stanford) Heart Failure Clinic.  Josh is in heart failure (he actually has been for some time), and Dr. Pererra feels it's time he's seen by the heart failure specialists.  This is the team that will ultimately decide if and when he's ready for transplant.  They will determine his treatment plan & will do their best to get his heart is the best shape possible.  In addition, Josh will begin seeing Dr. Pererra every month.  It's easy to forget how severe his condition really is, until times like these.
I know I should be a nervous wreck right now, but I've known for a long time that things aren't going too well for Josh & I feel like this is what he needs.
Overall, Josh has been in good spirits and is really loving school and life in general.  In the past when his health has declined his mood was terrible (because he felt terrible) and he seemed sad all the time, not the Josh we know.  We feel encouraged that he's happy and the same ol' kid despite his health issues.
I'll do my best to keep this blog updated with the latest.  I haven't done so well lately, but I'll do better!

Monday, May 19, 2014

Spring time....

Well it's about time for a post!  Josh is nearing the end of Kindergarten, and as much as I long for summer break, part of me is really sad for this school year to end for him.  He's done so well and has learned and developed so much, thanks to his amazing teacher and his very good friends.

This year at our new school we were really excited to learn that the kids could participate in the Junior Olympics.   The city holds community track meets for all of the schools in the district, and my kids were eager to participate.  For about a month and a half they practiced after school, training for their meets and I helped out with the coaching.  It was really fun for all of us.

I didn't know how all that running would go for Josh but told him to walk whenever he was tired.   (His cardiologist was just fine with his participation.)  He's such a competitive little athlete that he never wanted to walk, but it went fine for him.  He really kept up well, however in the evenings he was clearly much more tired than normal.

By the time the meet came around Josh was so excited for his big day, I was also excited but full of a wide range of emotions on his behalf. :)  As I watched the little guy put his toe to the start line, I started crying; tears of happiness, joy, maybe even a little sorrow that his whole life has been a scary race of sorts.  But overwhelming pride was what really filled my heart.

The best part was his huge smile as we met after his race.  He said, "Mom, I got last place and I didn't even cry!".  He's so funny.  It was a really great experience for us and we look forward to doing it again next year!

I don't think I posted about Josh's last cardiologist appointment.  Josh has a new cardiologist since Dr. T retired in December.  I was a little nervous about the idea of having someone totally new take over his complicated case.  However, we feel really good about our new doctor.  I feel like she's very proactive and listened to me thoroughly.  She has some concerns about Josh's function and some other things as well.  She wasn't terribly optimistic upon seeing his echo, but I'm happy to have some fresh eyes take a look and make some changes that are hopefully helping the situation.

We'll go back to see her pretty soon, we've been on a 3 month visit routine for a while now.  But even with the frequent visits, and the amount of meds Josh has always taken, its so easy to dismiss the complexity of his condition.  Day-to-day he does very well.  Lately he's been vomiting quite a bit after he eats, which is concerning because it's a sign his heart is functioning poorly, but even so, he just goes right back to running around and wrestling his little brother.  We're really happy with his quality of life, and that's all we can really hope for with  HLHS.