Cardiologist Update

It's been two months since we took Gabe off his Carvedilol.

Warning: Extremely Basic Explanation of why Gabe was on this medication:

When the heart pumps, it squeezes all the way and pushes all the blood out.  Gabe's was only strong enough to squeeze a little bit and couldn't get all the blood out so it pumped double (more like triple) time to get enough blood out to keep his body going.  This was a smart solution for his little body, but would end up wearing the heart muscle out very quickly as he grew, thus landing him on the transplant list.

He had been on this medication for a couple of years.

Some of you may remember that back in 2012, we were told Gabe wasn't a candidate for the Fontan surgery and would have to go on the transplant list for any chance of survival.  Then the doctor decided to try this medication and, while we aren't sure if it was the medication or just his heart getting stronger, he became a candidate for the surgery and the rest is history.

Since the Fontan surgery, he's done awesome.

Like for real.  You would never ever know he has half a heart if you didn't know.  His new cardiologist is blown away every time we see him.  Which is why we have been slowly weaning him off medications.  Many of these pills may very well have been needed pre-surgery.  But post-surgery, we want him on as little as possible.  Many of these medications he will need in the future.  So getting him off of them now if he doesn't need them will reduce the risk of him having a tolerance for them later when he actually does need them.

We've reduced 3 so far with no issues.

But this last one has felt different.

I got booted from the bedside seat.  Big Sister was his hand holder of choice.

It's tricky because, for a HLHS kid, Gabe is a beast.

T-ball, biking, running, not needing any resting.  He does more then he really should be able to.  But to us, the ones who know him best and see him everyday, he's just off the past couple of weeks.

His teacher says he says he has a headache a lot and he needs to lay down quite a bit at school.  We went on a normal bike ride last week and he struggled bad.  He's grouchier than normal and super tired by the end of the day.

All of which could be explained by starting kindergarten, a Summer of not being very active outside, and a few strings of later than usual nights.

Or it could be his heart telling us he's headed for trouble.

So we headed in to the cardiologist yesterday to see what was going on in there.

Since it was a somewhat emergency, we weren't able to see his usual cardiologist.  I was kind of glad because I wanted a second opinion in taking him off the meds.

The appointment went great.

His ECHO was showing strong heart function and all of his pressures are still awesome.  The doctor thinks that what we are seeing is just what it looks like for an HLHS-er to be growing.  He recommended just going with his lead and allowing rest when needed.

And like a real son of a gun, this past few days he has been back to his usual wonderfully active self.  He even got an exceptional behavior certificate yesterday at school.  His teacher said he was like a different kid.  So here's to hoping he keeps this up!


Fall Break 2015

As Public School Newbies, I had high hopes for Summer Vacation.

What I failed to account for was just how hot a Desert Summer can be.  We made a valiant attempt to go and do, but ended up hibernating most of the Summer.

But I knew Fall Break was coming.  And while our Fall doesn't look quite like the rest of the country's, it does bring the weather we moved here for.  Sunshine and 80s with no humidity and light breezes.  It lived up to all of my expectations.

Andrew's parents came for a visit and we went on a couple fun day trips.  There was t ball games and sleepovers and we stayed outside 99% of the time.

a chilly 70 degrees had him running for cover

We are anxiously awaiting his very loose bottom teeth to fall out. 
In the meantime, Josie lost 2 molars that we didn't even know were loose.

Yesterday, we resumed our usual schedules but with filled up hearts and renewed love for this city.

And I went to Target.  Alone.

It was glorious.

Turns out I love Fall Break.  And I also love sending them back to school!


A New Chapter

I started another book club and I'm super excited about it.

I've made some awesome friends and 90% of them live in my neighborhood.  We get together all the time for play dates and happy hours and it's great.  But there are usually 800 children around and sometimes it's hard to feel like we are getting any real conversation in.  And I missed book club.

So I merged the two issues and proposed that we start a book club.

I was kind of convinced that everyone would laugh at me, but they were all in.  We had our first meeting this week and it lived up to all my expectations.

I'm beyond happy about this people.

We read Girl On The Train.  I served up Gin & Tonics (main character has a bit of a problem with them) and set up Gabe's train set (thanks for the idea Mama!).  Everyone liked the book, nobody loved it.  My favorite part of the night was listening to everyone try to tell the two that hadn't read it what it was about.  It was hilarious.

my little helper who hasn't touched this train set in a year but suddenly was very concerned about sharing it with his mother who shares her oreos with him every time.


Our 8th Gotcha Day

Last weekend we celebrated the day we became parents.

8 years ago, when we got the call that changed every single part of our lives.  Little Josie Girl was on her way and it will forever be my most favorite day of the year.  So many dreams came true that day.

Josie has always been interested in her adoption story (unlike Gabe who looks at us like we are nuts when we try to tell him about his).  This past year was a big one for her in terms of dealing with what it means to be adopted.  She found out she has older siblings and her birth mom's name and had a lot of questions that we just couldn't answer for her.  There were tears and "Mommy I miss them" even though she'd never even met them and, man, there are some big emotions that come with adoption.

We've always been open with her.  We wait for her to ask and we divvy out details based on what we think she is mature enough to handle.  And sometimes we second guess ourselves.  Should we have kept that to ourselves?  Should we have waited for that information?

There are a lot of blogs about adoption that show you the miracle of Gotcha Days and finalization and the glory of saving children from places that aren't safe or good.  But not many dive into this hard stuff.  The questions you'd rather not answer and the statements that cut you right through your heart. The idea that there are other people out there that your child shares a connection with and how to reconcile that in your own heart, let alone help them work through it.

That's the stuff where redemption can happen.

And there is no easy way.  Like one of my favorite children's book says; "you can't go over it, you can't go under it, you can't go around it, you've gotta go through it."

But you know what is easy?

Celebrating the day the journey started.

The day we first held our miracle girl and a family was born.

She decided to celebrate by going to Build-A-Bear followed by pizza and yogurt with one of her buddies.