Josie
4th Grade
9 years old
Wants to work at PetSmart
Gabe
1st Grade
6 years old
Wants to be a police officer
8.26.2016
8.25.2016
307 Day Review
Well, hi there.
It's been awhile. Like 307 days kind of awhile.
I was thisclose to shutting this space down. I felt like it was just time to totally let it go. Print it out and hold all these memories in my hands.
But when I started going through the last 9 years of posts, trying to whittle it down to a manageable amount, I just missed it. I miss talking to you. Which is really just me talking to me, but written out so I can read it later and remember what it was I was feeling.
And man, so much fun stuff happened in the past year and there are no posts about it!
Can I just post it all now, a whole 307 days in this one post?
No. Don't worry, I wouldn't do that to you.
And I don't know.
Maybe I'll get back to writing. I mean, who am I to keep all these riveting thoughts to myself? Or maybe I'll just pop in and store pictures here for the kids to one day look back on and see how cool their Mom was (I'm looking at you Josie).
I've never, ever been good at reconnecting after a break from talking to someone. I just don't do well with small talk. So here's what happened in the last year and we'll just move right along from there. Sound good?
We've had an awesome year.
After 2014 brought us every tragedy and heartbreak we could handle, 2015 gave us restoration. It was like one long, really deep breathe. I took the year and lived it, every second of it. Even the pre-teen hormone filled ones that I wasn't sure both my daughter and I could survive.
It felt good. To just be. To find me again and shed off the labels I'd attached to who I thought I was supposed to be.
We went on trips and hosted visitors and my kids are real life people now. My company has also grown into a real thing that I am beyond proud of. Andrew has mastered the Desert Waffle Business and we survived another Summer. Gabe finished Kindergarten and Josie made it through 3rd grade. Andrew and I went to Vegas then we celebrated 14 years of marriage. Man, we are old! Josie played volleyball, Gabe played baseball. We've made friends and are feeling very much at home here now.
It's been awhile. Like 307 days kind of awhile.
I was thisclose to shutting this space down. I felt like it was just time to totally let it go. Print it out and hold all these memories in my hands.
But when I started going through the last 9 years of posts, trying to whittle it down to a manageable amount, I just missed it. I miss talking to you. Which is really just me talking to me, but written out so I can read it later and remember what it was I was feeling.
And man, so much fun stuff happened in the past year and there are no posts about it!
Can I just post it all now, a whole 307 days in this one post?
No. Don't worry, I wouldn't do that to you.
And I don't know.
Maybe I'll get back to writing. I mean, who am I to keep all these riveting thoughts to myself? Or maybe I'll just pop in and store pictures here for the kids to one day look back on and see how cool their Mom was (I'm looking at you Josie).
I've never, ever been good at reconnecting after a break from talking to someone. I just don't do well with small talk. So here's what happened in the last year and we'll just move right along from there. Sound good?
We've had an awesome year.
After 2014 brought us every tragedy and heartbreak we could handle, 2015 gave us restoration. It was like one long, really deep breathe. I took the year and lived it, every second of it. Even the pre-teen hormone filled ones that I wasn't sure both my daughter and I could survive.
It felt good. To just be. To find me again and shed off the labels I'd attached to who I thought I was supposed to be.
We went on trips and hosted visitors and my kids are real life people now. My company has also grown into a real thing that I am beyond proud of. Andrew has mastered the Desert Waffle Business and we survived another Summer. Gabe finished Kindergarten and Josie made it through 3rd grade. Andrew and I went to Vegas then we celebrated 14 years of marriage. Man, we are old! Josie played volleyball, Gabe played baseball. We've made friends and are feeling very much at home here now.
10.22.2015
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.
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!
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!
10.20.2015
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.
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!
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
SHARK TEETH!
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.
And I went to Target. Alone.
It was glorious.
Turns out I love Fall Break. And I also love sending them back to school!
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