Monday, March 25, 2013

Medical Updates and More!

Morning!  I really thought that I had posted prior to this, but I guess I haven't!  I have wonderful news to share.

On Tuesday March 12, we had Sully's big cardiac check up.  I didn't sleep for the nights leading up to it and I was pingy all morning.  I had to have Robert drive.  We were checked in and we waited for our names to be called.  Sully's cardiologist was just getting in as we were in the waiting room and he stopped by to sneak in a quick hug.  He was so excited to see Sully!

We had the echocardiogram first, and then we would talk to Dr. V.  There was a patient that was running late so everyone was behind.  When the echo tech came in, I recognized her as one of my regulars when I waitressed during summers in my younger days.  We were both glad to see each other. Luckily I had downloaded "The Lorax" to my Nook for Sully so we fired that up so he would lay down for the echo.  As she started to move the wand around on this chest, I could see her start to make weird faces.  Now, this of course made me incredibly paranoid.  Her face kept looking strange, and then she got up and said that she had to check with Dr. V.  I was in near panic mode, and bracing for the worst.  She came back in and said Dr. V wanted a few more pictures.
Afterwards, my anxiety level rising, Sully was toddling around the halls in his diaper and flirting with all the nurses.  He ran into an office, and when I went to get him, I realized he had found Dr. V's office!  Dr. V picked him up and sat him on his lap and said, "All right Sully, let's review this echo, huh?"  We chit chatted for a few minutes while he reviewed the echo images and then said to Sully, 'Well, let's go tell your parents the good news."
We walked down to the room where Robert was waiting, and that's when we heard the news I have been praying that we would hear.
The reason why the tech was looking to funny is because in the report she got prior to doing the echo, it told her to check on Sully's TR Gradient.  Essentially, Sully has some leaks and the TR Gradient measures the severity of the leaks.  Well, Sully's leaks have miraculously closed up, as has the hole in the top of his heart.  There is really no explanation, it has just happened. :-)  The tech couldn't find them and was confused.
Also, we were able to STOP THE MEDICATION!  For the first time in his entire life, Sully is on ZERO meds.  Nada, nothing.  In fact, Sully is doing such amazing things, and the surgeries haven't seemed to phase him, they want to use his findings to show other parents that a normal life can happen!  CHDs are not the end all of a life.  Sully is basically in the 1% of outcomes.  He is the exception to the norm, but I already knew that. :-)  With the exception on more surgeries to replace the valve when he outgrows them, we are completely "normal."  I can't even believe it.
Dr. V hugged us and told us what an amazing job we are doing. I was able to keep myself composed until we got out to the car, and then I totally lost it.  I have been praying about this and dreaming about this, and now it is finally a reality.  I called our parents and they all cried too.  Sully is our little miracle.
Here is a pic of Sully and Dr. V:

Buh Bye medication!

How amazing is that!!???!?!?!?

And for me and my odd belly mass; after a CT scan, and about a billion doctors appointments, we discovered that the mass is a mass of scar tissue from my previous abdominal surgeries.  I guess it is rare that the tissue forms a mass, so lo and behold, it happens to me.  Long story short, there isn't anything I can do about except for maybe more surgery, but then it would lead to more scar tissue, thus making it moot.  Oh well.  At least it isn't something worse!

Also, we are bringing the donations to Ronald McDonald House this weekend!  I'm so excited!  The inaugural event for Project Heart to Heart was great!  I'm so proud of our family, friends, and community.  When I get a final total, I will let you guys know!  Here is a news story that ran in the paper this weekend:

I will leave you with some adorable pics of my favorite, healthy boy!

Picking out desserts with his buddy!  (Sully is in the gray)

Getting caught attempting to scale the baby gate..

Playing with his new manly kitchen:

Walking with his Daddy in the snow like a big boy:

Being silly with Bailey cat:

My favorite Easter bunny:

Happy Monday!

Thursday, March 7, 2013

Random thoughts from a brain that is fried

There has been so much going on that my brain has been feeling completely fried.  I find myself thinking about the most random things.  I figured I would share those with you guys so you can ponder the same weird crap that I do.


1.  The TV show 'My Strange Addiction' really freaks me out.  I just want to know how someone thinks that drinking nail posh, or noshing on a loved one's cremains is an OK idea.  Never once has something like that ever crossed my mind.  I don't do laundry and think, "Man, I'm starving.  I should eat some of this detergent." I mean, SERIOUSLY.

2.  The Shaun White debacle.  Recently, snowboarder Shaun White has come under fire from the CHD (congenital heart defect) community.  Shaun White has Tetroloy of Fallot, which Sully also has.  Shaun has had open heart surgeries and really hasn't let his CHD slow him down.  I think that's so amazing.  Shaun White has been featured in a commercial for St. Jude's; some CHD parents and supporters are FURIOUS.  They think that because Shaun has a CHD, that should be, apparently, his one and only cause.  How dare he help kids with cancer? ::insert eye roll here::  Don't get me wrong, I am a cardiac mom through and through, but, would you want to be just known as the "heart kid?"  Or known because you have a CHD, not because you are a stellar athlete?  I wouldn't want that.  As I have said before, I don't want Sully to be know as "that kid with the heart problems."  And bravo to Shaun White for not letting that be his reason for being known. 

3.  I'm obsessed with watching 'One Tree Hill' reruns on Netflix.  It is one of my all time favorite shows, and I really think that James Lafferty a.k.a Nathan Scott, is my dream guy and I was supposed to live in Tree Hill.

4.  I wish I could give people on Facebook a grammar lesson.  The amount of times that your/you're are used incorrectly just amazes me.

5.  Speaking of Facebook, I really hate when people share a billion cutesy pics and jokes and random other things.  It really clutters up my news feed and slows down my ability to Facebook creep.

6.  I am so excited for Easter!  Any excuse to give Sully presents is OK in my book.  I ordered some new Bubble Guppies books and bath toys from Amazon and we are going to get him a big bag of veggie straws and some cookies.  He will love it.  I'm already working on his clues. :-)

7.  How do people eat french fries without ketchup?  I have seen it twice this week and I just don't know how it's done.  Ketchup is in my top 5 favorite food items, so it blows my mind when others don't appreciate its deliciousness.

8.  There are way too many 'social networking' sites.  Twitter, Facebook, Tumblr, Flickr, Instagram, Formspring, LinkedIn, and a bunch of other ones that I can't even think of now.  I think someone would need to make it their full time job to actually be up to date on all these sites.  I do currently Facebook (I am an FB addict), Instagram, and have a Twitter.  I have pretty much let Twitter fall to the wayside and use it to catch people that I know doing shady things, but I do enjoy this Instagram business.  I like to look at the cool pics and I love tweaking all the adorable pics of my Sully Monster.

9.  This has got to be the most random post ever... hahah.

10.  Due to my love of completely worthless morning TV, I will leave you with a joke, courtesy of Michelle Tanner:

Q:  What is a frog's favorite drink?

A:  Croak-a-Cola! 

... that was lame, but you know you laughed.... :-)

Happy Thursday!