Saturday, October 16, 2010

What happened????...........

“If you can meet with triumph and disaster
And treat those two imposters just the same……..
Yours is the Earth and everything that's in it…………….”
                                             R. Kipling

Okay, our life is BIZARRE and BEAUTIFUL at the same time……….I was just thinking the other day how nice it was to have a non-medical scenario………………..

But then let me tell you how our evening went a few weeks ago.

 I had been downtown painting at the “community kitchen” I was working on. (It’s my way of paying forward the kindness we’ve been shown). When I looked down at my phone and saw that I had missed two calls from home.  

(Here are photos of the community kitchen in case you're curious as to how the kitchen turned out!)!/album.php?aid=257375&id=786122737

I called home and Chris told me, “Panic’s over. Winston’s okay. He was standing up at the ottoman, went to grab the silver bird candle, and he fell backwards. He made a weird noise for a moment or two from his trach but now he’s doing okay.”

We chatted for a bit, he tells me had problems getting the catheter down, but that he got some secretions out which seemed very thick. He also says that Winston’s trach ties were loose and he tightened them up.

Chris sounded very calm but there is always, always a secret storyline when we talk trachs and incidents.

Since July 5th 2009, anything evolving trachs makes Chris’ heart rate increase…….. a tightness in his chest reappears ………..and a hint of anxiety comes back as a reminder of that fateful day when Chris had to do CPR and resuscitate Winston as blood was literally streaming out of Winston’s stoma.

I am still always in awe of how amazing he handled that mad moment. I don’t think I would have been able to stay as calm as he did.

But since that moment, it’s almost as if Chris has a little bit of post traumatic stress (for a great reason) when it comes to anything involving Winston’s trach.

But don’t get me wrong, Chris wouldn’t hesitate to rise to the occasion yet again if he needed to, I know that without a doubt. He handles all other aspects of Winston’s medical needs and fatherhood beautifully and with ease. Now with all of that said, knowing that Chris has a “get out jail free” pass forever for saving Winston, let me continue my story…………………..

Okay, so Winston fell backwards, he made a weird noise, he did a cough, and Chris noticed Winston’s trach ties were super loose so he tightened them. He checked to be sure Winston was not in distress and so they continued on with their evening.

I arrived home not much later, and seeing Winston fine and thinking nothing of it, we continued on as usual. Winston and I headed to the dog park with Sophie and that night we stayed for two hours just to be sure Sophie’s puppy energy had an outlet.

When we got home, Winston and I did our usual evening routine of a bed bath, pajama time and medicines. Chris and I were even laughing because Winston was giggling out loud while playing in the sink water……… was so cute we had to video it…………..little did we know………..

So thinking there were still no issues, during our bed time routine, I started to notice a weird sound from Winston. I go to suction his trach and the catheter wouldn’t go down……………..

“Uh, Chris……” I yelled up the stairs, “Did Winston’s catheter ever go down after the fall?”

“Hhhhhhhmm, no,” keep in mind he’s a fabulous dad who has a forever “get out of jail free” pass.

“He wasn’t in distress and was fine.”

So anyone who is around trachs ever, if you cannot get the catheter down, you stop whatever it is you’re are doing and you assess the situation. Do not stop until you figure out why the catheter is not going down!!

Quickly my face turns to a “poop face”……all scrunched up and serious. “We need to get ready for a trach change when the nurse arrives.”

The nurse arrives, we are all set up for worse case scenario…………remember we’ve been through a coding. So in our minds, it was prepare for the worse…..a spasm, anything………….oxygen ready, suction machine ready, land line phone ready………………….Winston was down on the floor, ready for the trach change when Chris spots something…………….

“What’s that? That’s his trach!!”, Chris says.

OMG……………………Winston’s trach was out for four and a half hours…………..that’s right kids, four and a half hours!!!!!!!!!!!!

It's a happy thing and a "OMG..........we're did we not notice!" thing!!!!  But it's a beautiful moment that's for sure!!!!  Bottom line, Winston breathed on his own that whole time!!!!  Basically his trach was too short and he needed increase the size to a pediatric size (which we have now done).

NOW the big question you want to ask is, "Will he lose his trach now?"

The answer is no.

Ultimately, the trach is a guaranteed, secure airway for any time Winston is having treatment or surgery.  It's basically peace of mind.  BUT we do know he will eventually lose his trach which is BRILLIANT!!!  :)

Friday, July 9, 2010

NYC yet again! THIRD Time's a Charm!!!

A few weekends ago I flew to Atlanta for one of my own adventures......trying out for Oprah's Next Star Casting Call  which is a whole other blog in itself (fill you in on the next blog). An hour after I got home, we were driving to the Emergency Room because Winston’s drain bag had decided to come out of its own accord. Just another day in the life of The Bertrands…………

If you look in the photo on the left, the white part is the part that is inserted under his skin...........crazy, huh!!!!

So within a few days after the drain bag came out, Winston had such increased swelling that it seemed like his tissue wasn’t absorbing the fluid fast enough and it was possibly collecting. The NYC docs thought that Winston may need the drain bag back in and they said we could try to find someone locally to do it. But to be honest, you want the people who know him, know his case, and really, really, really know the dynamics of the malformation to do it………. just in case.  Remember we have experienced the worse case scenario when Winston coded a year ago due to the Venous Malformation in his tongue.  (I absolutely cannot believe it's been a year since that surreal event!)

So we booked a last minute plane ticket and within 24 hours Winston and I were heading back to NYC for our third trip within 7 weeks.

“Yuck! I stepped in gum!!” I yelled forward to Chris who was pushing my suitcases down the sidewalk of the KC airport.

“Is this foreshadowing to how my trip is going to go???”

Laughter from both of us.

I wasn’t laughing when five hours later I realized I had forgotten my debit card at home, cried twice because the car service and hotel both were giving me a tough time and wouldn't let me check in, and then to top it all off, I bent over and split my pants W-I-D-E open.

Which even I had to laugh when that happened….how could you not?    (See evidence in photo from the left!  I am just SO glad that I packed a back-up pair!)

Not to mention, Winston dropped a big pooh in his diaper as I sat in the lobby of the Holiday Inn waiting for Chris to fax them payment info at 11pm at night……..ahhhhhhh, a day in the life of The Bertrands.

 I like to think of myself as the real-life Bridget Jones of the Special Needs world.............  :)

And just to be sure I felt like a complete failure, Winston’s swelling seemed slightly improved by the time we were checking him into surgery the next morning.

So long story short, the NYC docs felt that there was no need to put the drain bag back in, which is brilliant, and basically they stitched up the drain bag area, slapped some glue over his face-lift stitches and changed his trach………….the most expensive trach change EVER!!!!!!

Of course I’m very, very, very happy we went and I didn't find it a waste of time at all. Because what if it had been something, hindsight doesn't help in life or death medical scenarios.  But it is funny as a parent when you take your kid in and their cough disappears, their temperature fades, and so on. You feel like your credibility is shot!

“I SWEAR I think with my head and not with my heart when approaching these situations,” I tried to explain to the doctor.

“Maybe it’s because this is our first post de-bulking experience……”

I tried to restore what was left of my credibility………..

Dr. O was lovely and kind as always and of course didn't make me feel bad in any way. But I did feel like a complete wanker!!!

But the peace of mind we now have is price-less! (Well, not priceless for Uncle Phil and Auntie Cathi and the ladies of St. Joseph, Missouri… wasn’t priceless for any of them!!! Which by the way, thank you so much to all of you for your help!!!)

So Winston was in and out in just over two hours and then passed out in our jazzy Holiday Inn hotel room. But since we had time to burn, had to check out of our hotel room and wired money from Uncil Phil and Auntie Cathi (since I was still debit card-less), Winston and I decided to go do a power tour of the Museum of Modern Art…………………………yum!!!!!!!!!!! It was pure heaven for me, I must say!!!! 

I have traveled to art museums all over Europe and yet, I had not seen any of NYC’s big three (The MoMA, The Met, The Guggenheim). And so finally on our fifth or sixth trip to NYC within the last year, I was getting to go! Selfish but it was oh-so-worth-it!!!! Plus I tried to get Winston to pick up the love of art through osmosis since at this age he was definitely more interested in the overhead lighting and his giraffe.  Which I don't care if he never loves art like I do.  Whatever floats his boat will be fine by me!  But I had to take photos of Winston as an ode to "Where's Waldo" with him looking completely bored in front of some pretty fabulously famous works of art.

I, however, could not believe we were there!  Every single gallery I went into, I gasped and giggled with delight!!!  It was like Christmas in every room!!!!  I wanted to run around like one big art nerd hugging everyone and saying, can you believe it, it's "Picasso's Les Demoiselles D'Avignon" or "Warhol's Campbell Soup Cans".........everything was there!!!!  I seriously had a goofy grin on my face and looked like a mad, mad woman. 

It was like National Lampoon's European Vacation when you saw the Griswolds do the sped up version of touring the Louvre.  Picture it, I was pushing Winston in his La-Z-Boy on wheels, with it's written message on the front, at a mad pace and smiling and laughing wildly at all of the grandeurs of the art world..........

And I totally have to say, that Winston is the best accessory EVER in any crowd.  I laugh because I don't ever think of him as different.  So I can make crude jokes like this because I just think of him as a fabulous toddler!  But when you're in a crowded art museum, people give you sympathy eyes and then nicely move out of the way which works great when you're trying to get a peek at Van Gogh's "Starry Night"!!!!  I can rent him out for concerts, plays, you name it!!!!  :)  And please don't be offended by any of my humor.  Honestly, it is my coping mechanism.  I would die if I ever offended any of you because of my dark humor.  But let's be honest, Winston is going to have to have a strong sense of humor to fend off the cruel comments by other kids. 

And in case you have no clue who painted any of those paintings, it goes as follows:  Rothko, Picasso, Chagall, Van Gogh, Picasso again, Lichtenstein, and Warhol.  Not to mention all of the other surreal pieces we saw!!!  (My phone ran out of juice just as I hit my favorite Frida Kahlo!!!!) 

 Did you know I was such a proud art nerd????  :) 

And I have to tell you about a father I met when I was walking Sophie and Winston the other night.  The father stopped to talk about our puppies and after peeking in the stroller at Winston, he brought up that their son ws born in the NICU (neo-natal intensive care unit).  I always forget that one look at Winston gives it away that we were probably there, too.  But so long story short (as always), his son was deprived of oxygen for ten minutes and born three months early.  His son survived but has had a lot of learning obstacles along his journey.  In our conversation, an innocent comment was made by the dad about "how smart he could have been".........and not to bombast this father because he spoke very lovingly of his son.  But for a moment my heart ached and I thought I never, ever want to talk about what could have been. 

Every single one of us special needs parents joined a club we didn't sign up for but I like to think we all have a knowing twinkle in our eye that we cannot live the lives that we do with our amazing children and not end up better people for it...............remember every single situation is about perspective.  You get knocked down, you get up and say, "Is that all you've got life???"   :)  Or at least that's what I try to do and realistically some times it takes a little longer to get up but we can all do it with whatever life throws at us!!!!  Special needs child or not........

So, remember that when you get cut off on the highway, get a bad haircut, lose your job, have  medical issues, whatever it is--- big or small..........tell yourself, "It's completely poopy but I can figure this out!!!"  Take time to digest it mentally but then think of your situation as a detective novel.  How can you find the solution?  Easier said than done sometimes I know, so, remember it's okay when you just want to feel sorry for yourself, too!  :)

And on that note, that's all for now!  NYC docs said give Winston a month to heal, take photos and send them in and they'll decide what will be next!!!!!  :)  Big, big hugs to all of you!  I'll post my Oprah adventure next.  :)  It's sad and hilarious at the same time!!!! 

Cheerioooooooooooooo and have a lovely day whatever day it is that you read this!!!

Wednesday, June 16, 2010

NYC: Twice in ONE month......wowzahs!!!

Now I have to start off this entry by telling you all that I'm a bit heavy in the heart as I write this.

Never ask yourself if things can get worse because they always can.........................................

After surviving a second trip to NYC in one month, upon landing and basically floating out of the gate
in a sleepless daze, I was so happy to see my lovely husband.  Within a minute, he asked me to sit down
because he had some bad news.  And then he told me.  Berri (our female chocolate lab) had passed away
suddenly from what they think was an anheurysm.  Yes, she was eleven years old, but we didn't have an inkling that she had anything wrong with her, she was still very spritely!

Now, if you're not a pet person, I'm sure you're thinking, "Jen, you've been through worse."  But really, this has felt like the worst thing ever because Berri was there every moment of our day like a shadow making us smile and laugh. She was healing for our often hurting souls.  Our lovely snobby cats could care less about what we're going through (even though we love them just as much). 

So I write this going, "Really life???  Did we really need that one to happen now on top of everything???????!!!!!!"  And of course as always, I have to find the positive.  Her last moments included pigging out on a doggy ice cream and she didn't suffer for one moment.  :) 

Okay, so our latest NYC adventure...............................

I'll start by sparing you the suspense, I did not cry going through security this time!!!  :) 
Within a month, Winston and I have had to travel to NYC twice for treatments/surgeries…………….wow that was a lot!!! This kid is a seasoned traveler, I must say!!!! However, I know that he will start to catch on eventually that airplane rides with mommy never really end in fun!!!!

When we left to go to NYC for this surgery, I have to admit, I was very confident in my abilities to travel “han solo” because I had just done it less than two weeks prior. However, in my arrogance, I managed to forget my toothbrush, my pre-written Winston notes, and formula for our hospital stay (b/c their formula has iron in it and always makes him vomit). But forgiving myself for laxing in the well oiled travel machine that I had become, I still managed to feel pretty good about it all.

Chris and I have our airport goodbyes down pat. He gets a gate pass to help us on the plane. The check in people for the Midwest/Frontier Airlines pretty much know us now and treat us so lovely. Our “sit n stroll” stroller is still utterly brilliant and this flight out, I managed to not spill a single thing on me, and I now give my surrounding passengers too much information in terms of what to expect to see and hear from Winston and I.

I basically stand up, get the attention of everyone around us and since I have no pride any more say, "Just an FYI and this will be too much information, but you'll be hearing a series of beeps and noises and see lots of medical things going on!  My son has a rare disease and I only tell you because I would want to know what in the world is going on in that seat!!!"

Hilariously everyone always looks at me like I’m completely bonkers when I offer them this info. But secretly, I know they appreciate it deep down. One because it saves them any seconds of their life spent wondering what’s going on with that kid. And two it’s a great story for them to tell to whoever picks them up at the airport and they have a dull moment.

I have to admit, this trip I was flying pretty high feeling like, “I own this!!!!!   There are going to be no good stories to write about this time!”

And then there appeared my first story on the adventure......

When Winston and I arrived at Laguardia, we always load up Sherpa style, take the elevators down to grab our big bag and then once we have our luggage, we call our car service to say we’ve arrived. They then give you permission to go wait in the middle island and your car will arrive. The car service always asks when you call, what you are wearing to give a description to your driver.

“Black shirt (very original I know), glasses, taupe pants (yes, I use words like taupe even in situations like these). And I have a baby in a blue stroller.”

I spared telling him it was a La-Z-Boy on wheels. I asked if my car had a number and the guy said no, but there will be a sign with my name. Minutes later, I got a text that it would be a silver Lincoln Towncar and there was a specific car number. So needless to say, Winston and I were hanging out trying to look cool and casual rather than the exhausted pair that we were.

So as I waited, I saw a blue minivan pull up and in the front, lit by the overhead lighting, I could see a man talking and waving his arms in his car. My first thoughts were, he’s talking to his passenger in sign language. I casually kept glancing over, and I see him doing these arm movements that are almost tai chi in spirit along with a rant.

He pulls his van in front of me, gets out, opens the back of his van, comes up to me and points at his phone saying something that sounds like Bertrand. His van had the car service sticker on it and I thought maybe they sent a different car. So in that moment I focused all of my energy on him. I’m a friend of the special needs community so I didn’t want to take away someone’s lively hood because they were ecclectic…………..

I am NOT however, a friend of the Krazy Town community!!!!!!!!!!

Every part of me screamed, “DO NOT LET THIS MAN DRIVE YOU AND YOUR CHILD!!!!” This man continued his tai chi, all the while ranting about stuff I could not make out. And I’m 100% sure it was not a foreign language, it was English and the rantings of a mad man.

As he started to grab my bag, I said, “No thank you. We’re fine. I have a friend coming to get me.” And I grabbed my bag back.

He stopped, stared at me, continued his rant and seriously bizarre tai chi movements while I quickly got on the phone to the car service. The man got in his car, pulled up even more in front of me, and then rolled down his window and continued ranting. I just remember looking at the guy on the curb next to me and saying, “What in the h*ll was that??? I’m suppose to pay to ride with that????” And then out of the blue, came a guy who was smiley and nice and said my name.

“Mrs. Bertrand?”

What, huh???? Here was my driver all along???!!!! The new driver must have thought I was a quack because I was SO relieved to see him that he could have been a serial killer and I probably would have gotten in the car with him.

Now maybe the other guy was suppose to get someone else that had a name that started with a “B”. But either way, that man should not be driving anyone, anywhere. And yes, I called the car service and reported him. I’m not sure they got how utterly bizarre and scary this incident really was and you may not either. I would have to reinact the tai-chi and rantings for you to totally make you understand. And the dead look in his eyes could have been the clincher.

I have to totally admit, fast story, I promise, it reminded me of when I was a senior in high school and my mom and dad and I were driving up to the University of Kansas from Biloxi,, Mississippi to check out the school.

We had rented a Lincoln Towncar (evil Towncars) and it had managed to break down in Hattiesburg, just thirty minutes into our journey. Needless to say I was bored and went to the pay phone (it was 1993 hence no teenager with a cell) to call a friend.

My parents were at the car and the pay phone was right next to the gas station. I was blabbing away, like I’m doing right now, when all of a sudden there was a man in the booth doorway. He put his hands on both sides of the opening and filled the space.

“You with anyone?” was all he said. I remember staring into his mirrored glasses and thinking this isn’t good.

Then in the distance I could hear “##@@!!!, you get away from my daughter!!!” and my dad running across from the parking lot. As soon as the man saw my dad, he took off in his truck. I have to admit, I was pretty shaken up and made my mom go with me into the convenient store when I had to go to the bathroom. The clerk had never seen the man that we described. Which now when I think about what he looked like, he looks like he could have been the construction worker in the Village People. But at that time, it wasn’t very funny.

So needless to say, this event in NYC though nothing similar in nature took me back to that exact moment of standing in the phone booth. And as I rode to the hotel with Winston safely buckled in, I really wondered how that story could have ended had I thought he was my ride and gotten in the car. Creepy!!!!!!!!!!!!!!!  Just please always, always in life, go with your gut instinct!!

And just because I find it hilarious, on the flight home, I swore I was sitting next to a dodgy guy who wanted to be the next shoe bomber.  I kid you not, the guy made the man in the seat next to him move his bag from the overhead carrier so he could have his bag directly above him.  Then he weirdly counted the seats in front of him and not in an OCD kind of way.  Once again, I have to remind people that I am a huge fan of people with special needs!!  The more ecclectic the world is, the better, so I try to be aware of others!  :)  But this man gave off the wrong kind of vibes.

"That's it", I thought, "I will do whatever I have to if he tries to make something go down." 

Now you may think I'm utterly paranoid but I have had a few lightning strikes of bizarre occurrences in my lifetime so it really would not be a surprise to me if this was to be my next ecclectic event.  But I was determined to yell "help", jump on his back and take him down if he tried anything. 

The poor guy, I stared at him as secretly as possible.  I watched his every move.  Nothing was going to happen on my watch as I had Winston's pulse oximeter machine cradled in my arms............

And then I hilariously woke up and he was in the bathroom............."Ughhh!!!  I missed it, he's putting it together."  Now I have to say we were lucky everyone was not depending on me because I was so exhausted.  And weirdly the guy did come back from the bathroom rubbing his head and showing signs of anxiety.  But more than likely the poor guy hated to fly or had a migraine.  Either way, it was funny after we landed!!!

Now for the point of this blog, Winston’s surgery!!!!!

I had no choice, I had to add the extra line to the sit'n''s too short not to laugh!!  And after all of Winston's surgeries when he no longer looks like Chris Farley, we're going to "x" out his name and write "Brad Pitt"..........  :) 

Dr. Waner's goal with this surgery was to "de-bulk" the scar tissue that had formed from a previous local sclerossing which caused a mass of scar
tissue.  We  have always called it his Frankenstein Bolt and are happy to say goodbye to it!


It took only three hours for Winston to receive his "Joan Rivers Face-Lift"............

So what now you ask?

Winston will have his stitches and drain bag removed and slowly a little bit at a time, they will work around his face with various de-bulking and sclerossing.  I'm assuming we get a bit of a break now which will be nice.  And I have to tell you that I cried tears of joy after seeing Winston's "Frankenstein Bolt" gone.  Not because I care one bit how he looks but only because I know with every surgery and every treatment, it will make his life just a little bit easier because kids are tough.  But of course we will help Winston  to be strong and proud of who he is no matter what. We will teach him to use humor as a form of protection and strength.  And we will eventually have to just stand back and watch like all of you other parents out there hoping you did everything right!!!

And in case you're wondering, yes, we will get a puppy eventually.  Our house is too quiet without a dog and we want Winston to have one growing up.  Berri will never, ever be replaced but as we've learned through all of our adventures, you have to cherish the happy times and just constantly redefine your life.

Que cera, cera............................   :) 

Tuesday, June 1, 2010

NYC..........It's that time again!!!

Well kids, it was time for another NYC round of treatments......ohhhhhh, yeahhhhhhhhhhhhh!!!!  :)

Winston and I went on our own and Chris stayed behind to keep an income coming in.  So basically, it's tiring from all sides because even though Chris isn't with us physically, he ends up doing all-nighters, when we're in a hotel, skyping Winston's pulse ox machine while I try to get some sleep.  That way if Winston's machine alarms, he makes sure I get up to suction him, etc.  I usually wake up but I sleep better knowing he's there.  It is the best thing ever!!!

Now, what is a trip to NYC like you ask?

Well, you didn't ask, but it's kind of fun to explain because it's actually something I'm very, very proud of. You see, I'm a girl who can't manage to make soup from the can and I mess up making hot chocolates. (Sadly, both of those are very true examples!) So, the fact that I can travel with our child with medical issues and bring him back in one piece I find very impressive. :)

I laugh to myself secretly as people watch Winston and I before the plane boards. 

You so know I'm the lady no one wants to sit by or stand behind in line for security.  And I really don't blame them but it does make me laugh.  And I always tell people around me not to worry about having to sit by us  because Winston has a trach so he doesn't make sound! 

The equipment I travel with on the plane is as follows:

One Pulse Oximeter Machine--Hooked to a sensor wrapped around his toe and monitors Winston's oxygen and heart rate.

One Oxygen Concentrator & 2 back up batteries (heavy suckers)--Winston needs oxygen supplemented b/c of altitude and cabin pressure.

One Suction Machine--Use to suction his trach (sounds like a lawn mower and usually gets you a few good looks---always hilarious to turn it on in a quiet place like Starbucks)

One Feeding Pump & Accessories  I have to admit, we have it easy in this department, we just plug him in to eat which is WAY easier than a healthy child so no complaints here!

An Emergency Ambu Bag--better safe than sorry, it's what's used in CPR and is actually what saved Winston's life when he coded.

Now you take all of that fun stuff and you throw on top it, real baby stuff like diapers on the go, forumula, toys, dvd player, books, teething stuff and well, you can just imagine.............  :) 

Winston and I sit in coach amongst everyone and set up our mini hospital room.  And nicely, by the time we land, people who have sat around us are pretty nice because they've secretly watched the activities going on in our double seat. 

Winston passed out on the plane. 
The Pulse Ox in the foreground keeps me posted on his oxygen and heart rate!

Probably the most stressful part for me in the traveling aspect is going through security.......uggghhhh!!! 

Some times I get a security guy that's kind enough to let me go through seperately and help me with everything.  This trip home, I just started crying in the Laguardia security line because I didn't feel well, I was exhausted and the thought of going through the regular line just stressed me out! 

Luckily a lovely supervisor helped me and when I thanked him profusely he just looked at me kindly and said, "I have family."  And the other security woman started crying when I was crying because she knew how it felt because her child had been in the NICU..........can you picture the mess I was creating in security!!!  :)  But the moments of just being human, where a stranger becomes a friend in an instant, were just amazing.  I have to say that seeing beautiful human moments like these has been the best result from our whole situation (other than Winston that is!).
And if you're thinking, "Jen, it's just security, don't stress!"  Let me explain, that when I go through security, I have to take the oxygen concentrator out of my bag, I have to take my lap top out (b/c it's our dvd player), I have to take out all of my Winston meds and liquids that are used for formula and medicine flushing, I have to fold up the stroller, all the while holding Winston. 

I have it to a science now because I don't wear jewelry, I have my liquids all in a ziploc ready, I keep the oxygen concentrator in a compartment on its own, and I have slip off shoes...................I'm focused and I'm in it to win it!!  :)  Or at least that's what it feels like on the inside.  I challenge myself to be not as unfun to be behind in line as people think. 

This trip I was really sweating it because Winston is now almost a toddler.  His carseat is now HUGE, his stroller is I was secretly freaking out, how was I going to pull this off???

And then I found there's a thing called the "sit n stroll".  It's not an ideal only car seat.  But if you travel often, this seems to be the way to do it!  It's a car seat that turns into a stroller.  A handle pulls out of the top and wheels drop out from the bottom.  And it hilariously looks like a La-Z-Boy on wheels!!!  :)  And not only that, it worked brilliantly!!!!  You just have to know a few tricks about its weaknesses but it's worth every penny!!!

I look at this La-Z-Boy on wheels and I hear choirs singing because it saves me a huge hassle.  And not only that, I took it upon myself to add some art to it.

So often we're in public places and people don't want to stare and they try to be polite.  I've been determined to tell people.  "Hey, I'm okay with chatting about whatever!  I'm an open book, ask away!!!  And not only that, no question is stupid!!!"  Winston's fabulous new stroller provided me with the perfect spot to do just that!  And so with a few trusty paint pens, his message was simple...........

I have decided I'm going to add, "And oh, yeah, I live in a van down by the river."    :)

I know, I know, he's going to kill us when he's older and we've done all of these things for laughs!  But it was such a lovely ice breaker and it was fun to watch people laugh when they read it! 

Now, as many of you parents can relate, traveling with a toddler is always eventful.  It was always much easier when he was an infant and just a sack of potatos to carry around.  This time he kept me busy non-stop.  And I carried all of the comforts of home on my back like a sherpa only to discover that he was happiest to play with his toes, socks and a water bottle.  :)


This trip, however, I have to say was the best trip ever in terms of treatment and how quickly Winston has recovered!!!!  They sclerosed 15 ml of doxycycline in his left cheek and chin (mainly in micro-cysts).  They also did a bronchoscopy of his airway and to our excitement, they were happy to report there was no disease in the airway.  They are thinking he will be able to lose his trach in six months to a year...........woohooooooooo!!!  Now that is lovely!!!!  We're in absolutely no hurry but it is lovely to know it's not as far out as we once thought.



Now I must admit, I always prepare my heart for a 360 in everything.  So many times things change, etc. so I never fully get my hopes up.  It's just easier that way.  But you do secretly get excited to think that we may have passed the eye of the storm.

We were asked to go back to NYC on June 10th for a surgery. 

The brilliant Dr. Waner will surgically remove scar tissue from a previous sclerosing done locally in KC that created some issues and whatever other clean-up work he can do.  (They call it de-bulking which cracks me up!)

Dr. Waner did say that you have to be really careful b/c of all of the facial nerves when doing this.  But when he says it will be okay, you really do believe him.  And in case you're like me and you don't remember your seventh grade health class, here's a map of the facial nerves.

Winston, Chris and I are very, very happy to be home together again!!  Winston and I caught some lovely respiratory virus somewhere along the way (hospital and airports......hhhmmm, the two worst places to pick something up) and now we've shared the virus with poor Chris.  So needless to say our house is not a fun place to visit right now!  But we're resting and regrouping to only do it again in less than two weeks!!!!!!!!!!! 

Good times, good times!!!!  :)  Keep you all posted!!!!  jen 


Saturday, May 22, 2010

Part II of the "Winston Calling" epic adventure............

WOW.....time has passed!!!  All of a sudden, it's been five months since the concert.  Let's just say, my blogging life is a little slow!!  :)  But get excited b/c I've decided to do some short and sweet blogs of our NYC trip to keep all of you posted on our adventures! 

Winston today!  (That's an ulceration from treatment on his cheek.)

BUT, I can't not tell you all about the surreal concert that I wish we could re-live every day!!
So let me rewind though to the beginning of the LA event.

You must see and enjoy the 2 day epic event through our eyes.  And if you didn’t know me, you might not believe that this all is for real. But trust me, it is…………

Okay, so first things first! I asked Chris’ friends to fly out to LA to surprise him. His 40th birthday was this year and instead of it being a big party, we found ourselves at the hospital with Winston having a barium swallow study. What's a "barium swallow study" you ask? It's exactly like it sounds-- Winston drinks a barium mix and they take a live videos x-ray of his swallowing...........very fun for a birthday as you can imagine! (Hollahhhh to the KU Feeding Team-- thank you ladies for everything!!)
Chris' 40th Birthday in his X-ray gear for Winston's swallow study!

So since his birthday was lame, the plan was set, three guys would be flying out to LA to surprise Chris.

On the day we were to fly out, there was an awful storm. Snow, wasn't pretty. Have I told you that Chris hates to fly because of a crash landing coming home to England from Greece once?  It involved screaming people, babies crying, a diverted flight and a landing gear that was stuck.

Our ride to the airport for our LA trip consisted of Chris' usual flying freak-out but this time it was worse because of the weather. 

I was use to his fear making him say things that he didn't really's actually quite funny....afterwards!!!  I hilariously use to cry, but now I just hope that security doesn't think he's another shoe bomber!  Visualize Chris with his crazy curly hair, pajama pants on that he wears every day of his life, pacing and muttering to himself.........exactly my point!  I'm surprised they don't pull us into an airport security room!

"Why are you making me fly???? It's like giving someone with the fear of snakes a snake for a present and telling them they have to take care of it..........." and thus our adventure began as I was chasing him around the airport.

"Please xanax work for him" I thought. I honestly did not think he was going to get on the plane. And yet, I did so well at not spilling the beans that his friends were going to be there to surprise him. Let's just say, it's always an eventful flight which is totally understandable when you have an extreme fear of flying. But it does make for some hilarious stories afterwards. (Ask me about the Denver airport and the credit card incident some time.)

Within minutes of arriving at our hotel and meeting up with my brother Jim, who flew in from Arizona, Chris turns to me and says, "That's Jesse Jackson!" Mr. Jackson heard him say that, stopped, and offered to take photographs with us.

After photos and chatting, we were off!  Now, keep in mind, this is the first time we've been away since our life was turned completely upside down which is all the more reason this was very surreal.  We had just spent the last year and a half going through a reality show, winning it, pregnancy shocker, filming, being told Winston had a tumor, keeping it all a secret, 7 wks in the NICU, Winston dying and Chris doing CPR and saving him, multiple PICU visits, and NYC treatment trips...........and then we found ourselves in LA about to have the best two nights of our lives.

I hadn't gone to sleep at all the night before because I was up all night putting together framed photos of Winston as Ron Burgundy for all of the musicians and comedians who had volunteered their time. So I was running on empty before the event even began. It was a silly little gift but it was so important for me to have something that said thank you. Plus who doesn't love a baby with a mustache???  If you know me, you know I'm obsessed with mustaches and find them utterly hilarious.  Everything in life is better with a mustache........even a rare malformation.  :)

Winston as "Ron Burgundy" from the movie "Anchorman".
 All we were missing was his jazz flute!!!

So I know I'm being a bit long winded already but I can visualize every moment because it was the first moment we started to feel human again.  We had been going along beautifully in life and then BLAMMO,
life gave us a sucker punch that knocked the wind out of what I'm saying is, bare with me.  I'm a little lame at times because I'm learning how to interact with people again.  :)

Okay, so, I go to the venue where all of the bands are doing sound checks and I finally get to meet the lovely Auntie Violet (aka Violet Clark of "Grand Duchy" fame) and Mrs. to Charles Thompson (aka Black Francis). 

It's funny b/c we had talked so much online that I almost felt like I was about to go on a blind date!  But she was so nice and welcoming and it couldn't have been more perfect!!  And as I'm chatting with Violet, picture this in the background---brilliant bands like The 88s, OK Go, She Wants Revenge all doing sound checks.  My brother and I were in heaven!!!!!!!!!!!!!!!! 
She Wants Revenge Sound Check

Not only that, the band members were very nice to check out the table of Winston photos that I had brought.  They said nice things like "we are honored".........whoa!!!  Auntie Violet, you have some lovely friends.
Auntie Violet and Uncle Charles

And so the night began.  Chris freaked out that his friends surprised him, the concert sold out for both nights (not even Jane's Addiction who played there weeks before had sold out) and it felt like we were in heaven.

Chris, Fletch, Marty, Dave and Billy

Chris and I were able to go sit on the stage and watch up close.  I tell everyone that Flea sweated on me and I giggle when I think that my all-time fave, Jack Black, gave me a shoulder rub. 

Chris and I had not smiled like that this in a long, long time.  You can just see the happiness that had been waiting to show up for so long.  Please note that this photo is on stage and that Damian Kush of OK Go is standing in front of me, Kim of The Muffs is in the foreground (you have to check out her music--she has the best wail ever) and Auntie Violet is in the white hat like our little guardian angel.


Flea was kind enough to take a photo with us! I SO hate doing that b/c I know they get harrassed all of the time.  And as you'll see lovely, lovely friends from Design Star came to show their support!  Stephanie & Matt from my season and then some of my favorite producers!!!  :)

Matt from Design Star 3, Auntie Violet and myself

                          My brother Jim w/ the nicest person you'll ever meet, Weird Al.

                                                   Enough cool!  :)

I do have to share that I don't usually get star struck.  I manage to realize that everyone is just a real person who happens to be very talented.  But when I met Jack Black back stage, I was a complete tool.  You can say, "Oh, I'm sure you weren't."  But I would have to say, "Oh, but yes, I really was." 

After I had done my favorite line to JB that I was the Jack Black of design because we both have facial hair and highlights and received my shoulder massage of encouragement to speak in front of the crowd, I found myself with him and two others back stage.  I usually have lots to say but I had nothing.  I completely drew a blank and in my attempts to try and play it cool, I got a sweat on and realized I had just done what I swore was never my style.  Oh, well, you can't win them all!  :)  He couldn't have been any nicer and I will never forget getting to meet him! 

And as if one night of music that live streamed to 41,000 people and included the legendary collaboration of Black Francis with the bands Tenacious D, Weird Al, Flea, The 88s, David J of Bauhaus, Michael Penn, OK Go, Kim Shattuck of The Muffs, She Wants Revenge and The Pixies (minus Kim Deal) wasn't enough...........we had a night of comedy, too!!!............I think Auntie Violet knew we needed to laugh!!!

The brilliant Bob Odenkirk and Brian Posehn........

And so we began night number two in a smaller venue but with just as huge names!!!!
Bob Odenkirk of multiple fames, Brian Posehn of "The Sarah Silverman Show", The Pixies Drummer (Brian Lovering) who knew was so funny, Tim & Eric of "Tim & Eric's Awesome Show, Great Job!", and a lovely class of comedy students.

Bob Odenkirk  &  Brian Posehn

Tim & Eric

I have to admit, it felt like my wedding. 

So many people coming to say hi and chat.  When really I just wanted to jump into a dark corner and listen!  It was the worst time to meet Dan and Lonni from Season 4 of Design Star for the first time. 

Because I had so much that I wanted to talk about with them but I also wanted to watch the show!  Needless to say, we had to have a chat about the highs and lows of tv land and life after tv land.  Those two could not be any lovelier!

Dan & Lonni of Season 4 Design Star Fame
Had I known I was going to be sitting between two such good looking people,
I would have worn make-up on the second night!!!  :)

I have to tell you, I didn't drink one cocktail either night.........I wanted to soak it all in.  And I have to tell you, I find myself going on YouTube rewatching the videos of everything to re-live it. 

It's not because I don't absolutely love my life because I do.  Despite the craziness of the last year and a half, I couldn't love my life any more. 

And it's not that I think that those two nights were the climax of my life (even though topping them will be near impossible)'s just that for two nights, when Chris and I really needed it, we were able to escape the seriousness that had become our lives through laughter and music.  Two of our all time favorite past times.

Plus I feel like there was so much to take in that there was no way your brain could process all of the surreal moments that were happening left and right.  We all witnessed some really legendary moments.

Here are links if you want to experience "Winston Calling" for the first time or relive something brilliant.

Thank you SO MUCH to Auntie Violet, Uncle Charles, Todd, Jo and all of the amazing bands, venues, and behind the scenes crew.  Honestly, besides raising the money, you all gave our souls a jump start.

Also, thank you to everyone that attended.  You all were a part of something very, very special and we will all be talking about it for years to come. 

Winston says thank you, too.  He owes all of you one lawn mowing.....his list is getting long!!!  I tell everyone that Winston is like a Nascar car, we should have sponsorship stickers all over him!  (We don't watch Nascar in case you're wondering, not that there's anything wrong with it if you do.)  :)  Ricky Bobby is our only Nascar hero!  :)

Big hugs and thanks for reading this if you managed to get this far!