Monthly Archives: December 2016

She can Fly! ✨

In mid-August of this year, we were going on a family vacation: Orlando, Florida to go to Disney World!! And not just our family… everyone! Gramma, Uncle Mark, Auntie Sarah and Anna! It was going to be great. Buuuut at the beginning of August, Mia was diagnosed with Pulmonary Hypertension. Pulmonary Hypertension (PH) mean she has high blood pressure in her lungs, and as a result it’s hurting her heart and making it impossible to breathe. If she had gotten on a plane… the altitude to which it flew would’ve made the pressure worsen and she could’ve died!! If we found out that she had PH even two weeks later than we did – she would have been ON that plane. I really don’t even want to try to imagine what would’ve happened if she was. Needless to say, we never made it to our big family vacation. That was hard. Of course Thea was refunded, but still; that stung. But we handled it as a PHamily. I mean really… Allie got over it pretty quick with Shopkins 🙄 Mia suggested we buy them for her to soften the blow. She’s such a thoughtful kid, seriously. Aaaaaaand then there’s Today! Today we have written proof from Sick Kids Hospital stating that Mia’s symptoms are stable enough to be Cleared to Fly! Disney… Here we come!! 

Woo-Hoo!! 

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❄️Chill with Bob Ross❄️


Last nite we were snuggling as a family on the King Size in our room… we were watching Bob Ross paint a beautiful picture of a gorgeous wintery scene – he is so Chiiiiiill, it’s unbelievable! And all 4 of us enjoy watching him paint; it’s so calming – anyway… the point is, while we were cuddled in niiiice and close; it was so quiet and peaceful while Bob was just painting away… I was listening to Mia breathe. It was laboured, and she was very obviously struggling. Of course I’m concerned, so I ask her, “Mia, are you ok?” and exhaustedly she replies, “Ya, I just had a hard day, and I’m really tired.” Wanna know what she did that made her so tired? She decorated a gingerbread with her cousins at my parent’s house… then we had Christmas Dinner with Mark, Sarah and Anna at Thea’s. It was all wonderful! She had fun and we enjoyed ourselves very much… but the point is, that’s it!! That’s all she did. She has less stamina than that of an out of shape 40 year old. Mind you, she is enduring day 2 of yet another ‘Site’ change, and she doesn’t sleep well… but Man! I feel for this kid. Having PH really does suck!! Maybe it’s a good thing that I’ve never loved winter… and maybe when they’re up for it, Mike can take Allie to do fun wintery things like tobogganing and outdoor skating; while Mia and I stay in and just Chill with Bob Ross 😉

PS. If ever you’re feeling anxious,  watch Bob Ross paint a picture… it really does help! 

😳Holy Scary Day, Batman!

I just got home from dropping the kids off at school, I’m just washing my face, you know, getting ready for my day — And I get a phone call — Crossland PS — my heart literally always stops every time that number comes across my phone… so what now? — PANIC!!
I answer the phone, it’s the office manager, Andrea. She very calmly tells me something to the tune of: “Chris, the alarm on Mia’s pump is beeping. It says there’s a blockage and the pump has stopped. She’s kinda freaking out what can I do?”
In my mind: Oh F*ck!
But what do I say?: “Ok thanks, can I talk to her for a sec please?”
Mia (thru tears): Mama, it’s beeping and I’m scared”
In my mind: Omg! Omg! Omg! Are you f*cking kidding me? WTF? What the hell do I do? Shit. Shit. Shit.
But what do I say?: “Ok baby-girl, no biggie, we’ll be right there. Love you, kiddo”
In my mind: Holy F*ck!! OMG! Omg omg omg….Where’s Mike? Ok, alright… yes! He’s out gettin’ stuff… Ok. Call Mike… he can drive us both to the school. I don’t want to do this alone!!! Ok… VM. NoOoOo! Ok. It’s ok… call again VM. Breathe Chris… just breathe. Call again. He answers! “Hey babe… can you swing by and pick me up… the school called, the alarm on Mia’s pump is going off… it’s saying there’s a blockage – and the pump has stopped… we gotta go, Okay?”
So I start gathering up the stuff that I know I’m going to need when there’s an emergency… well theoretically… because I’ve never actually had an emergency before!!! I have no idea what I’m about to face; so I grabbed my emergency bag — ALL of what I need is always in that very well-stocked emergency bag that I carry everywhere I go — I grab my manual aaand out the door I went. Ummm, ya so… it’s cold out today, I’m standing like an idiot freezing my ass off in my driveway just waiting for Mike, who, in my mind, is taking FORever (even tho I know he’s not) so I go back inside and grab the keys to the other car – cause seriously; I cannot get to the school fast enough!! – when Mike pulls up. I jump in, I’ve already got Laura on speaker phone and while we are driving toward the school, she’s giving us on instructions on what to do when we get there. (Laura is the nurse associated with the pharmacy who supplies Mia’s drug and she is part of the 24 hour Remodulin support line) We pulled up to the school… and thru the window we can see that Mia is calm… she was laughing and being silly with Robin, Andrea and Nadine.
In my mind: Thank God she’s not hysterical!!  Hysterical is so much harder to deal with. This group of staff are absolutely amazing! Ok – So, that’s the mood we need to go in with order to keep up with her current state of mind… Excellent. Good to know..
So when we walked in… you’d probably never know we were actually scared shitless!! In fact you probably would believe the opposite was true… you would have thought we’ve done this a thousand times before, like it was no big deal and that it happens all the time. We’re Laughing. Making jokes. Making sure no one is freaking out… especially not Mia!! Using everything in my emergency kit, and with nurse Laura on FaceTime, we’re calmly figuring out what the heck was wrong, why is this alarm going off!?!?
In my mind: Is Mia even getting any her medication? Holy Shit!! How much time do I have left? OMG! I am ACTUALLY living my nightmare.
This is the first time the pump’s alarm has ever gone off AND of course the first time has to be when she’s is not even in my presence!!! This is the first time I’ve gotten an emergency phone call!! This is the first time I have to use the emergency procedures that I’ve only read about, but I have yet to see; let alone perform!! And not only is this is the first time I’m doing all of this, but I’m doing it with an audience!!  And I can’t even freak out, because I am trying not to freak out Mia!!! Finally we figured out what the problem was… It was actually a malfunction in the pump itself. That means that this time her life was never actually in danger: BUT WE DIDN’T KNOW THAT!! In MY mind: It felt like my daughter was attached to ticking time-bomb, and WE were the Fricken Bomb Squad!! Lemme tell you… that was intense!!

And when it was all over, after we’d found the problem, remixed a cartridge of her medication and hooked her up all safe and sound to the back-up pump; even tho she was a little shaken, Mia stayed at school. I guess she felt confident that I knew what I was doing (if she only knew what was in my mind!) So when we were done, she just went about her day as if it was absolutely normal; like nothing out of the ordinary had happened!! New Normal?  Maybe?, that’s all we ever want for her.
But let me tell you… as soon as I took one step outside of that school. I started hyperventilating. I couldn’t control my breathing. And I sobbed uncontrollably. I believe I was on the verge of a panic attack.  I gave my head a shake as I tried to comprehend what the hell just happened? What did I just do? What if….? And then I broke-down ~ Into a completely useless sobbing mess. I took pretty much the rest of the day to shake it.. I really hate stress.

I am really glad that I am able to display a pretty calm appearance on the outside, when I was shaking like a leaf, scared as hell and wanting to die on the inside. That was reeeeeeally really scary!! Realistically, I can say that that was the scaredest (is that is even a word?) thing that I have ever had to do since before her diagnosis. And I have seen and done some scary shit! I don’t wanna do that again. Holy Crap. Just breathe. Breeeeathe. Exhale…

UPDATE: Laura got the pharmacy to ship out a replacement pump immediately so that we didn’t even have to think about not having a back up pump. It arrived 4 hours after we left the school. incredible. 

Finally! Some Good News! 🤗✨🤗

I just talked on the phone with Allison – she’s the Nurse Practioner to the sleep Dr. at Sick Kids. We have spoken spoken on the phone before, to set up Mia’s an at home sleep study (with the Oximeter: one nite with the oxygen mask & one nite without)   And when I talked to her this time she sounded absolutely exuberant! 

Here are my notes… hope you understand them… 😬 

I say… Yay!!! That’s definitely a Victory! Now… Bring on the Cure! Wahoo!!! 🎉

#TemporarilyExhaling #BeBraveAndSparkle✨ #AnotherVictory

Feel Better Fairies

Since Mia’s diagnosis of PH, I have definitely discovered that there really are some people in this world who truly do have hearts of gold. I refer to these people as ‘Feel Better Fairies’.  They are helpful, loving, kind, selfless, generous and… always around! Be it a kind word of encouragement or a gigantic hug right when I needed a shoulder to cry on. Or perhaps it came in the form of a London Fog, an unexpected text, cooking a meal or taking the kids for an hour or two so we can exhale; even for just a moment… These Feel Better Fairies really do help to keep our spirits up so that we can continue on this journey Sparkling with Hope. 

One such Feel Better Fairy recently gave my mother some money for me with instructions: She is to spend it on herself… on anything she wants. My guess is that this fairy was thinking that I may need something to lift my spirit up. 

So what did I buy?… INK!

Yesterday I went to see Lyndsey, my favourite (and only!!) tattoo artist and she created for me the most spectacular piece of art that I believe honours the significant role that Feel Better Fairies play in our lives. They do this just by being who they are and loving us the way they do, and as a result they are making this horrific journey feel that much easier and way less lonely. 

Isn’t she GORgeous?!?! 

It’s not all bad…

Katrina: “Hey Chris! How are you? I know it’s kind of a silly question to ask huh? I know your household has been having a hard year which is truly an understatement.”

Chris: “I’m not bad. I’m actually learning a lot of life lessons through this. And I believe I’m becoming a better parent! Not to mention learning what’s important and what isn’t. I’m discovering the people I thought would be there for me every single step of the way; no matter what… don’t even say hello, let alone ask me how I’m feeling. But that’s OK! Not everybody was designed to be a support system. It’s absolutely fine. I figure a lot of it is all in the attitude, right? Some days are really really shitty, I’m not gonna lie and pretend they’re not. But other days, we’re actually awesome!! I’d say we’re becoming closer as a family. And that’s all I’ve ever wanted… A family who is real and loves unconditionally. Because that’s what’s important. Thank you for asking 😊 
How are you? Are you having the time your life out there in New York? Is it everything you hoped for? Or is it completely different?”

My Family! I can’t tell you how much I love being part of this Clan! ✨

Just Breathe… 

She is sleeping without oxygen tonight. We’ve been told they need to know since being on the medication, how she reacts to sleeping both with and without the O2 mask. She has an Oximeter hooked to her finger to measure heart beat and oxygen saturation. She hasn’t slept without that oxygen mask for even a single night since she was diagnosed with PH and had the sleep study. Before that, she was seizing in the middle of the nite, and we were running off to Sick Kids Emerge!! And so tonite will the first time she will sleep without it since then… And we’re supposed to just be living as if we have normal a life!! Ha ha ha ha. Nope. Trust me when I tell you; Ain’t nobody sleeping tonite! We are taking some comfort in knowing that her her Oxygen sat is averaging 97/100 and her resting heart rate ranges anywhere from 52-120… right now it’s sitting nicely at 60bpm. But try as I might, I’ve learned to never let my guard down!

Holiday Teacher Gifts!

https://phacanada.akaraisin.com/pledgesforph/ebe21490d52d4b96934e0329afa4bb1a

^^ WHAT’S THAT ^^
It’s the time of year where as parents we are left wondering… What the heck are we supposed to get for the kids Teachers to say THANKS during the Holiday Season…
Teachers are the Real Heros; shaping our children’s young minds so they can be the leaders of tomorrow!  So of course during the holiday season, we like to show our appreciation by giving them a gift for all their hard work during the school year, right?!  That being said, I’ve heard many teachers tell me that although they appreciate very much the thoughtful and kind gifts that they receive, they don’t actually NEED anything – some have expressed that rather than spending money on material things, that perhaps making a donation in their name to your favourite charity could reward them in a different way!
That being said: This year, would you consider (in lieu of a gift) making a donation in your childrens teachers names to PHA Canada?
The Berdan-Clan will making homemade cards with personal messages from the girls, and then we’ll add a bit of information on what Pulmonary Hypertension is and include a Periwinkle HOPE Ribbon pin.  I’d be happy to provide pins and information to anyone who would like to considering doing the same for their teachers.. Thanks for your consideration!
A very small background on why we’ve chosen PHA Canada as our charity of choice:
For about a year, Mia was experiencing breathing problems, at first they were nothing to be concerned about, but they seemed to be getting progressively worse, so of course we started trying to figure out why… In May of 2016 Doctor’s told us that Mia had Asthma ~ we were given puffers and sent on our way. But her breathing issues continued to get worse! She looked grey and sullen, she had no energy at all, then she started fainting, then having seizures; waking up in the middle of the nite with chest pains resulting in emergency visits to Sick Kids Hospital… Asthma?… No way!
In August 2016 Mia was diagnosed with PULMONARY HYPERTENSION: it is a progressive and fatal disease to which there is No Cure!
That link again:
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How’s Mia?

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I get asked all the time, “How is Mia?” Umm, well… you see; that’s a loaded question isn’t it? That is really really difficult to answer. Why? Because the Remodulin is doing its job SO well that the kid doesn’t look like she’s even sick; let alone like she’s dying.

So everything is back to normal right?  No! It isn’t!! It really really isn’t!!! Pulmonary Hypertension doesn’t have a cure. Period. So she’s not actually really all that great at all!! She just looks great! Sure, she feels better, that’s a relief… but absolutely nothing has changed for me. Nothing. I actually don’t feel any better at all! Why? Because I still have a daughter with a fatal disease. FATAL. With no Cure.
Donate here:

https://phacanada.akaraisin.com/pledgesforph/ebe21490d52d4b96934e0329afa4bb1a