Two Cal Massacre

We’ve discussed how Andrew has a feeding tube.  This is no surprise.  Today I’d like to discuss what goes into the feeding tube, and also what happens when you leave it unattended…

First order of business is what exactly goes into Andrew’s belly whilst he slumbers.  The answer to that is a sticky formula substance called Two Cal.  He gets the Vanilla flavor, even though he never actually tastes it, and it smells kind of like almost-expired french vanilla creamer.  You’re all “hmm… something smells like cake” then you’re like “wait, nevermind…”.   The best thing to compare it to is Ensure.  For all intents and purposes, it’s the same damn thing!

Second order of business is to give a brief description of said feeding apparatuses (apparatii? apparatusys?).  It’s set up like an IV, with a bag hanging from a pole and a machine that slowly distributes the formula through the tubing.  Every night he hooks up a new bag, pours in 4 delicious cans of Two Cal, and waits for it to make it’s way down into the tip (stop) before hooking it up to his Mic-Key button.  There have been SEVERAL (more than I would like to admit) instances of him forgetting about the wait time and thus having to clean up Two Cal.  I also feel comfortable enough with you guys to say that there’s a copious amount of formula remnants on his side of the bed, his nightstand, his sheets, etc.  MY side, however, is flipping pristine!  Which brings me to our final order of business.

Last night our oldest and smallest dog, Storie, was acting really weird.  She was running around all over the place (not unusual) and trying to dig in the bed (slightly unusual) all while her food bowl was out in the open WITH food in it (HIGHLY unusual)!  Storie is a first class food hoarder and will often fall asleep in front of her bowl just so Willow and the boys can’t get any.  As I’m looking at her and telling her to calm down because it’s FREAKING bed time, and I was TRYING to watch Friends, I noticed her ear was all sticky and matted down.  As I mentioned this to Andrew he just said, “SHIT!”  This was one of those times that he had forgotten about the wait time and while Storie and Willow were licking up the free dessert off the carpet (GROSS!) it had been dripping on their heads the whole time and now they looked like sleazy, product-happy, car salesmen and, even worse, smelled like rotten cookies mixed with feet!  We took them individually into the bathroom and cleaned up their ears and the tops of their heads.  Unfortunately, I did not take a picture because you’d have thought Storie was being tortured.  But Willow rather enjoyed the hair dryer – so there’s that.

Here’s one of my favorite pictures of the girls (Willow on top, Storie underneath) so you can see the fur and get a little better understanding of their hair with Ensure-like gunk caked all over their noggins.

xo,

Amber

Happy Wife, Happy Life.

You guys! I seriously have to tell you about this past Saturday’s adventure and the lengths my RIDICULOUSLY amazing husband went to to make me happy!

The first thing you should know is that Andrew went on a quick 10 stint of oral antibiotics for a nagging fever that he couldn’t get rid of on his own.  He started on Friday, so he’ll be on them for a few more days.  Nothing super relevant to the story, just feel like I should relate this blog post back to CF somehow!

My friend, we’ll call her Sally, had her birthday back in April.  Being the awesome friends we are we got her a trip to a vineyard for a tour and tasting! The problem was that we all wanted to taste the wine! But who would drive us home? I somehow managed to convince Andrew that he could drive us all, in his SUV, to the vineyard and back. The vineyard was about an hour away, so he’d also have to find something to do while he was there…

Most of the girls met up at our place and piled in the car, and we head out to pick up the “Birthday Girl”. Pretty much immediately after we turned out of our neighborhood, Andrew got pulled over. He was going 48 in a 35. In his defense, the 35 mph road in question is a FOUR LANE road, people. FOUR LANES!  Of course, Andrew’s inhaler (with the spacer attachment) is sitting next to me in the chair.  The cop motions to it saying, “Is that an inhaler?” Andrew says yea because, guess what?, IT IS! So then the cop says something about it looks like something else or whatever.  Paraphernalia reference – we get it! Move along!  I get all pissy that the cop would even point it out (“And if he makes us get out to search the car I’m gonna lose it!”) but it actually might have helped Andrew case because he got off with a verbal warning. Apparently it was a “complaint area” and there were like 85 officers around.  My complaint is that they have made the speed limit on a 4-lane road 35 mph, but I don’t think that would stick.

We had to stop for gas and Andrew wanted to throw a little more air in his tires. So we’re all chilling in the car, chatting away when hunger strikes!  So my friend, we’ll call her Jen, goes to open her door and all I hear from the front is a loud THUD and a slight groan… That’s right – apparently Andrew was checking the tire behind Jen’s door and he head was right in front if it when she swung it open. He may or may not still have a bruise from that one. Oops – strike two, right?!

We finally make it to Sally’s house and head out – then turn around to get the info for the winery – then head out again!  When we get to the vineyard, we all unload and grab our stuff and Andrew says he’s gonna go find something to do but to text him when we’re done.  So we go start our tasting and PS – they had WINE SLUSHIES! I realize this is not a new thing, but it is in all caps because that’s the only way to relay the deliciousness to you! OMG – AMAZING and I would drink one right now at work if I had one. I don’t even care! Ok, I’m done.  We do our tasting and our tour and we all go to get another drink and peruse the shop.  While doing so, I text Andrew to let him know that we’re done – AS INSTRUCTED MIND YOU! We’re outside just hanging out on the patio and Andrew pulls up. We’re all “HEY ANDREEEEWWWW!!!” He’s all “Hey guys.” So we ask him what he got into and he’s like, “Oh, I was in a movie.”  That’s right – not only did he get pulled over and smacked in the head, but he also left a movie 2/3rds of the way through, nachos in tow!

Even after all of that he STILL hung out with us until we finished our wine AND took our silly asses downtown for MORE drinks!! What a guy, right?!

Until next time!

xo,

Amber

Hey, Stranger!

Oh my! It’s been a hot minute since our last blog post!!  But, it’s also been super busy around the Heider Haus.  (See how I spelled “house” like we’re German?) The first half of our summer has been hectic, but also loads of fun!

Andrew and I have both embarked on new careers!  Andrew has finished, and more importantly passed, his Real Estate licensing course and is ready to take his licensing exam so that he can start working with a local real estate company in the very near future!  So, all of you North Carolinians out there – or those of you who might intend on moving to our fine state – make sure you keep him in mind when it’s time to move!

As for me, I have recently started working at Duke University’s Fuqua School of Business! I’m in the Admissions Department and my “official” title is: On-Campus Events Coordinator! So far it’s been a blast – and I’ve only been here a little over a week! So that’s good, right? Another cool thing is that I’ve got one of my greatest friends in the same building! It’s always nice to work so close to someone you have a terrific relationship with!

So aside from our working lives, we’ve also been busy in our personal lives.  We took a nice relaxing beach trip to Myrtle Beach with our friends and had a great time! (Even though I had a legit cold for the majority of the weekend! Boo!) Salt air is always really nice for Andrew, so whenever we get to go to the beach I try to make him take as many deep breaths as possible.  I’m sure I sound like a crazy person when we’re on the actual beach though. “Andrew- breathe a lot, ok? Like right now – are you breathing?  Take a bunch of really deep breaths!”  Bystanders probably think I take the term “Nagging Wife” to a whole different level.  Which I do, but not necessarily in that instance! Besides, I’m pretty sure he’s already breathing –  it’s just added insurance!  What if he suddenly forgot? I’m just looking out, guys!

We’ve been having an uncharacteristically rainy summer so far, which I am just fine with.  When it’s really dry/humid the air quality is worse which means less time Andrew’s allowed outside! Without his bubble. JK – he doesn’t have a bubble! GOTCHA!

So anyway – that’s what we’ve been up to! Sorry again for the serious delay in updates! Summertime is crazy, for sure!!  I hope you all are having a rocking summer, too!  Until next time…

xo,

Amber

Every Dog has it’s Daddy

Did everyone have a good Father’s Day? I hope you did! Or if you don’t celebrate Father’s Day – I hope you had a good… day!  Obviously, Andrew and I don’t have any kids.  Or maybe that’s not obvious, I’m not sure.  I mean – we could seem like two totally mature human beings with our shit together to you… little do you know! We do have some shit together, but probably not all. No, definitely not all of our shit together.  Like, one or two shits.  Ok – this got out of hand rather quickly.

ANYWAY – News Flash: Andrew and I don’t have kids.  However we do have 4 dogs.  Yes, I said FOUR dogs.  To us this seems completely normal, but usually when I say how many dogs we have I get the typical eyebrows raised look of “how the f-” amazement.  I mean, it’s really just simple math.  I have two hands and Andrew has two hands.  THAT’S FOUR HANDS, PEOPLE! One for each dog. A fifth dog and we’d be overwhelmed, with three dogs we’d be off balance.  So now that we have these four wonderful, albeit regular pains in the ass, dogs we’ve reached a moment of completion.  Even though the dogs are somewhat selfish and got Andrew exactly ZERO things for Father’s Day – they still showed him how much they love him with endless kisses and potty breaks!! They know he needs that Vitamin D and exercise!

So – you wanna meet ’em? No? Guess how much I care? Since this is my blog – you’re gonna!

Here is Storie!  She will be 5 in November and is the princess of the house.  She’s also my second in command when it comes to reprimanding the other dogs. This is for the following reasons: 1. She is TERRIFYING when she’s pissed. (just like her mama) 2. Andrew is useless when it comes to discipline.  He’s an empty-threatener.

“Don’t hate!”

Then there’s Maverick!  He will be 4 in August… (holy balls!)  I’m not really sure what his deal is… except that he is the most like Andrew.  If you leave food out in a 10 mile radius he WILL find it and he WILL destroy it.  He can even open takeout boxes and close them like nothing happened.  This would be impressive except that we’re always hungry. And that chicken fried steak was NOT for him!!!!!!  So why keep his goofy ass around? Because he is probably the best spooner in the whole wide world.  I’ve done a comparison test, in fact.

“CHEEEEEZE!”

Next up is Smith!  He got his name because he looks like a secret agent in a black and white suit!  He also has this white streak down his back that could either be a mohawk or a tie depending on which way you look at him.   This guy is so silly! We call him “little man” because he was SO small when we got him.  But now he’s a lanky hot-mess.  He’s also a Border Collie-Pointer mix so he hunts everything.  And by “everything” I mean lizards, bats, birds, the other dogs, his tail, etc.

“My name is Smith and I’m quite a studious- A BIRD!”

Finally, our little baby is Willow, although she’s not MUCH of a baby anymore – she’ll be 2 in a couple of weeks.  Aptly named for the infamous best friend of one vampire slayer, and who just so happened to be a hippy witch/Wicca.  And a lesbian.  But that’s neither here nor there.  Willow is our comedian.  She is the funniest of the pups.  She likes to be under things and will get under anything once, just to try it out.  The bed, the coffee table, the couch, the dining room table, seriously – anything she can fit under.  She’s also one of the best secret whisperers in the world! But I have to be careful what I say and do in front of her or she’ll go whispering it around the whole neighborhood! I get NO privacy!

“Oh, hello! I’m Willow! whisper whisper whisper”

So, anyway, those are our dogs! They are pretty amusing!  Right now, they are spending the week with my parents, having a little beach vacay! When they left last night Andrew and I realized that our life is pretty flipping boring without them around!  We didn’t even know what to do.  So we played charades and tried to get the other one to figure out which dog we were being.  It was dumb – not at all fun.  We’ll probably do it again tonight.

HAPPY FATHER’S DAY TO EVERYONE! Including my puppy-daddy, Andrew!

ALL ZEE PUPS!

 

On an unrelated note – like WAY out of left field – this conversation happened on GChat while I wrote this post:

me:  hahaha

:9

:9

🙂

wtf

Andrew:  Heh

Press shift!!

me:  hahahahahahahahahahahaa

I’m an idiot

I pressed shift cuz I thought something cool was gonna happen when you said that.

me:  But in my defense I thought you said “Hey Press shift!!” and I was all, “Ok – Cool!!”

Nothing happened.

*cricket cricket*

xo,

Amber

 

Appointment Day

Andrew’s appointment went swimmingly today, and not just because of all the rain from Tropical Storm Andrea.

His breathing tests were great again- he’s still at his baseline! AND his weight is…. Wait for it… 134!!! That deserves a big HELL YEA!!! He also signed up for the new TOBI Podhaler which is one of his treatments but with a streamlined contraption to make it quicker! So lots of good things today, aside from the impending rainpocalypse!!

FYI- if you lovely readers ever have any questions or thoughts, don’t be comment shy! We love your feedback- I pinky promise!

xo,
Amber

Nebulizer/Vaporizer, Same Difference

A lot of people in the CF community have asked about Andrew’s portable Nebulizer.  On an ordinary day, he uses his regular PARI Nebulizer that sounds kind of like an air compressor and has all the tubes and cups and usual stuff.  But when we went to London a few years ago – ya know, where he proposed to me at midnight on New Year’s Eve next to the Thames River under the fireworks, NBD – we were having a hard time getting it to work with their “foreign” outlets. No pun intended.  We did some research and found out that in Europe they actually sell Nebs in the pharmacy, over the counter! A) That’s freaking awesome. B) This is because CF is more common in European countries. Andrew took a quick walk to the pharmacy and snagged an awesome PORTABLE Neb.  So, on days where we’re on the go or we don’t have access to a receptacle, he takes his Omron Portable Neb.

The plus side is that it’s easy, quick, and can be done anywhere.  The downfall is that it looks (kind of) like a marijuana vaporizer.  Andrew has already talked about how his  inhaler with the spacer attachment resembles a bong, so to the “untrained eye” a lot of his medical paraphernalia resembles tools of the pothead trade.  We have gotten some pretty interesting remarks from people in public like “Hey man, you just do that anywhere?” Or “Yo, can I get a hit?”  But this past Friday was pretty amusing.

We were meeting some friends downtown for a double date night of fun and Andrew grabbed his portable neb to get some treatments in on the way there.  We pulled up to a stop light and as I looked over I saw the folks in the car next to us were staring and laughing quite uncontrollably!  I realized they were watching Andrew do his med and thinking “DAMN! That joker is toking UP!”  Ordinarily, once spotted, onlookers look away and giggle to themselves, but these peeps were legit!  We both look over, they’re still laughing and, yes, pointing. I waved – they waved back.  Andrew does the bro nod – they laugh some more.  The next logical move would be to take a picture of them laughing.  Obviously.

I mean, it is pretty funny when you think about it.  You pull up next to a bright red VW Beetle and passenger is just puffing away on this alien contraption.  I can only assume that they were laughing because they were secretly envious of the device that can ONLY be used to smoking mary jane AND probably totally jealous of Andrew’s complete disregard for the law! EFF THE PO-LICE!

***

On an unrelated note – I’d like to take this opportunity to say that I am very proud of my husband for working so hard and not making his life revolve around CF, but for just living!  We have an appointment tomorrow – I’m super excited to see how much his fat ass weighs now! COME ON CHUBBY, LET’S GET OVER 130 lbs!

xo,

Amber

Occupying CF

Well, hey there!  It’s been a while, how have you been? I’m sorry for the lull in blogging but Great Strides took up a BUNCH of our time! Occupying CF is hard, y’all!

Anyway – this is just a quick update about our fundraiser.  And also a little thank you shout out to everyone that donated, walked/ran, or held fundraising parties for our efforts.  We really appreciate the overwhelming support from our family and friends.  As a team, we raised $1,652.00 for the CF Foundation! I’m hoping that next year we break $2,000 – because that would be the bee’s knees.  On top of that, we had awesome team shirts – and no I’m not bias because I designed them.. PSHT! We also had a pretty rad tent situation.  When I got the email from the Carolina’s Chapter of CFF about setting up tents and decorating I immediately thought: Challenge Accepted!  Our lovely (and ginormous) tent was graciously offered by two of our close friends and I got to work with all things shiny, gaudy, and streamer-y.

Here, please enjoy these pretty pictures…

Our lovely tent and banner!

Men at Work.

The Starting Line…

Fair Verona, Queen of Occupying CF and Tired Pup

It was such a beautiful day – the rain held out until we had everything packed up and we had a nice long walk around our beautiful city!

THANK YOU again to ALL OF YOU!!!!!  See ya next year, Great Strides;)

xo,

Amber

May All The Way!

Happy May, Friends!!  We are officially 5 months into 2013 – you’re welcome for that perspective.  My, how time flies! With the start of May happening just yesterday, we have officially kicked off CF Awareness Month! (see: #CFAwarenessMonth)  I know a bit ago we did an FAQ on CF in all of it’s wonder, but I want to share with you guys a few ways to SPREAD awareness, because knowing is half the battle.

The easiest way for all of you social medianites out there is to use the hashtag I mentioned above, #CFAwarenessMonth, in all of your posts! It doesn’t even have to be about CF. It should… but it doesn’t HAVE to! Just get people talking and it will work itself out, probably.

Another big part of CF Awareness is taking action through advocacy! There are lots of ways to become an Advocate for CF. Currently there are actions needed to help prevent disability limitations (yes, CFers are considered “disabled” and they need the Social Security Administration to quit making it so difficult to get some benefits!) You can work to protect CF care programs state by state and you can send good ole Congress a shoutout asking them to protect our progress toward curing CF!  CLICK HERE for access to all of these great methods of advocacy!

Are you a Facebook fiend? If so – you can follow the CF Foundation and share, like, comment, stalk, etc all of their posts and then your friends will see and be like “YO! What’s CF?” They are also on Twitter, Google+, and YouTube! HOLLA!

If you’re all like, man – I would really like to update stuff but I have no idea what to say to make my loyal followers aware! Then here’s a couple of ideas:

-30,000 Children and Adults have CF in the US.

-More than 10 million Americans are symptomless carriers of the defective CF gene. (Get tested!)

-About 1,000 new cases of CF are diagnosed each year!

And, finally, this lovely month is riddled with CF Great Strides walks!  Which is the number 1 fundraising event for CF and the CF Foundation!  It may be easier for you to drop a couple of dollars toward an event, write it off on your taxes, and pat yourself on the back! If so – why not do so with our team!! (Shameless self promotion is not so shameless when it’s CF… Truth Bomb!) If you’re interested, go to our home page and click the yellow “Click To Donate” button at the top! (We’re giving away prizes to random participants… it could be you!)

Alright, do you feel aware? Do you feel informed?! Then my job here is done…

xo,

Amber

The more you know!

With Great CF Comes Great Responsibility

Hello, again!  Happy Pollen’s-Everywhere-Don’t-Wear-White/Spring to you all!

We’ve gotten a lot of feedback from other members of the CF community applauding Andrew for all of the hard work he puts into staying on top of his treatments, physical therapy, etc.  Because of that I was inspired to take a moment and talk about compliance with medicine and treatments for CF.  And I guess really any disease, but I can only preach to one at a time… Please feel free to interpret according to your own needs!

I have heard many stories about Andrew’s wayward teenage days.  We were acquaintances after high school, but I don’t remember much about him.  Except for that decrepit straw cowboy hat…  Anyway, he was not such a great patient, once upon a time.  It’s hard to maintain all of the medicines and treatments when all you want to do is go outside and play with your friends.  He has 3 rounds of treatments each day, plus 3 sessions on his Physical Therapy Vest, plus making time to go work out at the gym which is actually a really important part of his routine.  He does, most of, this on a regular basis!  But that wasn’t always the case.

Admittedly, he slacked off a lot throughout high school and early college.  No one wants to say “No, bro, I can’t go longboarding in this awesome weather because I have to do like eighty-million treatments!”  But the truth is, not adhering to Doctor’s Orders can be more damaging than taking a wicked spill because you’re too awesome to wear knee pads in front of your friends.  It has taken him quite some time to get back on track from his adolescence, and he will tell you it was NOT worth it!  As your resident Queen of Nagging and Scheduling, it’s really not hard to get into a good routine!  You can absolutely get three rounds of treatments in, all the vest action your little heart desires, and some gym time while leaving personal time to, I don’t know, clean the house before your wife gets home? Or play Xbox… whatevs!

Andrew has finally found an awesome balance between compliance and still having a life! He gets all of his treatments done, all of his vest time in, and most of his gymming done WITH spare time to go outside and play with his friends.  Yes, sitting on a patio drinking pretentious craft beers counts as going outside and playing with your friends… when you’re 27!

 

xo,

Amber

 

PS – Feel like donating to a worthy cause?  Stroll on over to our Great Strides page and make a contribution!  KICK CF’S ASS! 

CF ROCKSTAR

I know we like to post things on here that are pretty funny.  Laughter is the best medicine right?  This post may not be the most hilarious piece of writing you’ve ever read, but we also want to share positive news with everyone. No Negative Nelly’s on this site, friends.

Andrew has appointments every 3 months to make sure he’s doing ok.  And probably to double check if he still has CF… Ok, probably not.  Well, he had an appointment recently and it went really well!!

When he goes in, he has to do breathing tests to measure his lung capacity and “stuff”.  I don’t go in there during that time.  There’s not really a reason… That I know of… Maybe I’m just not allowed in there?  I don’t know, moving on.

ANYWAY! He blew really well! (Pun intended) His numbers are UP and that is GREAT news!!  His Doc even said they were the highest they’ve been in about 18 months.  We always get really excited after visits like that because it means a) he’s being compliant. b) he’s able to breathe a little bit better. and c) we’re that much farther away from a transplant! So YAY, Andrew! You’re a CF ROCKSTAR!

In addition, his weight is up too! Which brings me to a new segment I want to start on here: Foodtastic Fridays!  I’m going to FORCE (most likely at butterfly-knife-point) Andrew to post at least every Friday with food he likes and ways to get a lot of calories, which CFers need! So, be looking for food tips and tricks and recipes, oh my!

I HOPE EVERYONE HAD A GREAT ST PATRICK’S DAY!

xo,

Amber