The Ugly Truth

*Play song, "Frustrated" with this post

Haha, I've always wanted to have a blog post with that title.... and probably could have before now, just wanted it to be truly fitting ;)

So, before I post pictures and stories from #12, there is just some things that need to be said about staying in a hospital and trying (oh what a funny word right now) to get sleep. 

As it is, it is 3:27 am (and you can bat at my grammar all you want, but you try this one handed at this time of night!), and a lot of things have not been "our friend" tonight. I think this term comes from the teacher in me, and how I must be nice to even those things that are really the bane of my existence (really hate that term though!). 

Number one would be pain and all the things we've tried to unsuccessfully control it with (Nubaine, Lortab, and now Morphine... all of which are creating a lot of gas as well, which lets face it, doesn't help either!). Sad, sad, sad that my girl wakes up every 10 minutes pain contorting her face, expelling a cough or two that you can tell are excruciating... and then eventually can be comforted enough to go back to sleep until the next 10 minutes. SUCKS! And I would take the rest of it gladly, if I didn't have to watch my baby through this (meaning that she didn't have to be in pain, not that I just didn't have to see it).

Now, that was my number one, and like I said, I would take all the rest of this in a heartbeat if it meant that my girl could be pain free... but lets face it, she just had the back of her throat torn out, and life is just that something like that should hurt. No matter how much we don't want it to. So now I will go on with what else is bothering me, and that is all things pertaining to "sleep time" at a hospital.

For one, nothing, and I'll repeat that with a big fat nothing is comfortable to sleep on here. Therefore, no position is comfortable either. And yes, it seems such a waste that my little 3 year old is in this massive (to her) hospital bed, and what a shame to waste the rest of the space, but she is a little less than willing to share. Yet, she gets mad when you go too far away, so really it's a win-win there *sigh*

It wouldn't be all bad if all rooms were created equal, and it's sad that we know enough of this hospital to know that is far from the truth! For instance, last time we stayed in the PICU, we had what was best described as a fold-out couch that fit both of us comfortably and neither of us had to leave the side of our desperately sick girl at the time. Even the room on the medical unit that we had when we first got here that time, had one of the foldout chairs, but it was wide, and still fit both of us somewhat nicely. Different story after we moved off the PICU back to the medical unit (but not the same room as before, obviously!), just the tiniest foldout chair, that barely fits one.

Don't even get me started on what we have right now, I'll just say that I'd gladly take the small foldout tonight! We have a recliner (which Steve is inhabiting at the moment) and a stationary, low back chair (which I am inhabiting at the moment), and if you're in the chair, well lets just say that sleep is not an option (hence why I'm blogging).


Also, something has to be said for the nursing staff and the fact that they never change the volume of their voices to reflect what time it is... I mean I guess it's all the same to them, but have a little respect at least that it is 2 am, and people well lets rephrase that, patients are trying to get at least a little sleep so that they may recover... and then it has to be said, their parents are too, so that they may care for them at their best *oh wow, sorry about that one!*

So, in closing

Pain, pain go away, come again NEVER

And please Primary, for the love of everything, could you just consider making all rooms equal for those of us that take refuge in here all the time and consider it unfair that someone has our old room (you know the one with the nice ((well nice for a hospital)) sleeping arrangements!). And maybe, lets keep things down to about a 4, that's not asking too much is it?!

And one more thing, one of the funniest rants like this I've read from another parent living in a hospital, was from my friend Kelly (mentioned her in this post), you'll have to read her post "On The Benefits of Being Blind" it's hilarious! 

That is all. Pictures and story from #12 to come tomorrow if I ever get some sleep!

The Day I Met Rick

Play song, "Man in the Mirror" with this post

Just so you know, this post was written, rewritten and tweaked again and again in the last two weeks. And I still feel apprehensive about posting it, because I still don't feel like I've done it justice. But the reality is, I will probably never feel like I can do it justice. So I'm posting it, but please keep that in mind.

I was literally floored by some of the responses to the last post I got. I had so many people ask me about this man, Rick.... and I realized I have never really shared my knowledge of this most remarkable human being. It's sad really that I haven't, because really he is one of the best people I have had the pleasure to meet.

Rick doing what he does best: capturing the world as he sees it through his camera
*photo courtesy of Mark Sogard*

So here it goes, I'm going to do my best to explain how I feel about this guy, and what he is trying to do with the world.

I will first take you back to nearly 3 years ago when Emarie was still a tiny baby. We knew of her diagnosis at this point, but still had a limited knowledge of what we should be doing for her. There were of course the obvious specialists that we were recommended to see, and for the first 6 months, we were preoccupied doing all that we thought we needed to. Seeing the orthopedic specialists, the cardiologists, geneticists, and some others. The one where our story starts though is the cranio-facial clinic, in other words, the cleft palate clinic. This is where you meet with the team, which consists of a plastic surgeon, an ENT, a speech therapist, and a pediatric orthodontist. Our first visit went great when she was 2 months old, and we scheduled and took care of her first prosthesis when she was 2 1/2 months old. It wasn't until her follow-up that we began getting the notes the doctors took, sent to us in the mail.

How I felt about my daughter when I first laid eyes on her, is nothing short of unconditional love. I did not think anything of her appearance, other than her chin and nose were small. But I saw them as endearing and really she was the most beautiful thing I had ever laid eyes on. That's why it came as such a shock when we were told of all that they thought was "wrong" with her. All I could see was my beautiful daughter, that I had waited so long to meet. But nothing could prepare me for what I read in those Dr's notes some 5 months later.

"Emarie has significant, visible facial deformities and is abnormal in appearance" exact words from a pediatric orthodontist.

To say the least, I was shocked, sorrowed and deeply hurt by these words. I couldn't see it at all, no matter how hard I tried. She looked perfect to me, but was that just because I was her mother? That she grew inside me for nine months, and was essentially a part of me?

And I couldn't let it go... that is, until the day I met Rick. It was about 2 weeks after receiving this most heinous note that we headed to our first ever Chromosome 18 Conference in San Antonio, Texas. And thus where we met Rick Guidotti the former fashion photographer. I cannot even describe in words the awe I felt while sitting through his presentation which was my first impression of him. Sure we'd heard his name from others at the conference asking if we'd met Rick or had him take our daughter's picture yet. I'll have to admit that after I saw..... no, experienced his presentation, I was a little intimidated. I didn't know what to say or do after that (if you want to see a presentation similar to the one we saw, view the video below).

But I will say that nothing surprised me more than his first words to us as I held my tiny 6 month old baby in my arms.

(this part barely above a whisper) "Look at her" and then he actually gasped, "how do you get anything done? You must just want to stare at her all day"


I had to think, "is he for real?" But I could see it in his eyes, and it was like he could only see her. I saw him looking at her through my eyes, which was nothing short of remarkable. It was hard to hold back the tears as he photographed my girl and captured her in a way that no one had before.

This picture actually appeared on an online medical journal article

And FYI, I could not get my hair to cooperate in the humidity!!

He really brought what we her parents saw in her to life. I can never thank him enough for that. I knew it, that my daughter truly is beautiful, and I was never going to allow anyone to make me doubt what I knew to be true again.

Click Here to see more/better quality pictures from the 2008 San Antonio conference. And password for this one is "Texas"

Emarie can be seen in pictures: 0014, 0017, 0043, 0068, 0101, 0117, 0133, 0291, 0297, 0306, 9985, 9983


Our experience at next year's conference in 2009 was no different, except maybe better. This time we were eager to have Rick photograph Emarie, and he captured her in many ways. Playing in the pool and with her daddy. 

Click Here to see more pictures from the 2009 Vegas conference. And password for this one is "Vegas"
Emarie can be seen in pictures: 6587, 6584, 6576, 6527, 6517, 6513, 6506, 6492, 6484, 6482, 6476, 8090, 8096, 8097, 8098, 8101, 8145, 8480, 8526, 8529, 8556, 8568, 9278, 9280

 To learn more about Rick and his mission, please visit his website Positive Exposure

I need to hold onto the way Rick made me feel about my child. And we all should embrace the world that he is so desperately trying to create. So, watch out world, you are all going to know him one day, because of what he is working so hard, and in many ways succeeding at.... and that is changing the world. I really wish there were more Rick's in the world, because I think it would be a hell of a better place. If every person could see the world through his eyes even for 5 minutes, I'm certain that lives would change. He's one of the few people I know actually taking a stand to end stereotypes, discrimination and just plain ignorance. I commend him for that alone. And I say "that alone", because he is doing more, so much more. 


*All pictures used on this post with permission by the owners :) Thanks Rick and Mark!*

The Moments We Live for

Play song, "Just the Way You Are" with this post

Days like this are so precious, so necessary. That is, the moments when we special needs moms get to see our kids doing things that all kids do. 

I live for this. The moments that she's not in the hospital. Not at some kind of appointment, whether it be a doctor or a clinic, or a therapy appointment. She is just being a kid. And a damn good one at that.

I'll even take the temper tantrums and the melt-downs, because you know what? She's getting set off by things that all kids get set off by. Like leaving the park. And getting out of her wagon. And being taken out of her new walker (you know, the thing that gives her independence). 

She's swinging in swings

And sliding down slides

and yes....

She's walking!

She may not being doing this like your everyday kid, but she doesn't know that... and you know what? I hope she never will!

She is doing so many things that many thought weren't possible for her, and I love her guts for that.

And in this moment, I am a proud mommy and nothing, not my problems at work, or the pending doom of our house, or the medical problems, or anything else...

I repeat, nothing will steal focus from that.

Random!

*Play song, "My Favorite Things" with this post

This post is a bunch of random things that I needed to fit somewhere. 

So just know, that they don't really correlate, but they're all worthwhile to be on the blog!

First up, I would like to introduce the new shirt design for this year's annual Chromosome 18 Conference

Recognize the four-eyed, pigtailed little character to the far left?? Yes, she was inspired by none other than our own Emarie! This shirt design was created by the talented Sarah Hunt, who's little sister Becky has 18p- (meaning the short arm is where her deletion occurs, rather than the long arm like Em). This family is very talented too, because Becky is a published author! She wrote a book on how bullying affects people, and Sarah illustrated it (we bought a copy for Em at the Vegas conference). We'll be purchasing 3 shirts, and if you want one click here (well not yet, but soon, and this is where you'll go to do that!).

So proud to announce that one of my life-long Besties and her husband

 Ty & Lace *cute couple*

Are having one of these!

And yes that's an official picture of their fetus (gender yet to be determined). Just so happy for them both! They're going to make amazing parents!

If you haven't seen this trailer yet, then you're really missing out!

*warning* explicit word used once (and as tastefully as possible, if I might add!)
And FYI, this movie is still in pre-production because it's in need of funds. You may donate on the site linked below, and thank you!

Em's birth story was also featured on the official site for I am Beauty, click here to see it.

We also celebrated Steve's birthday this past week, and out of respect for him, I won't say what birthday it was ;)

 Giving daddy her card (she was so proud!)

the card we wrote and she signed

 Opening presents (two shirts, but we're also going to go see Matt Kearney and Owl City as part of his present.. tickets go on sale today!)

Em also got daddy his favorite candy bar!

Ice cream cake I made for the event (consists of vanilla ice cream, hot fudge, caramel, bananas, strawberries, whip cream icing and toffee bits)

The reminder I put together of this past month's events. On the back (seen in the mirror) shows the picture of Em in the PICU and states: Day 2 in the PICU, fighting for her life

And on the front (side you can see best), it states: Day 6 on the children's floor, ready to go home. We love you, our miracle girl!

There you have it! Told you it was random!!

An Ode to Minnie

*Play song, "Mickey Mouse Club March" with this post

Well, it seems that Emarie has a new buddy. One that she now has to take everywhere!

The car

The store

 Telling Minnie, "I luv ya"

And of course, always gives Minnie hugs!

She wants her when she's sad

Can't help but love this picture, just melts my heart

And of course, it just wouldn't be bed time without Minnie!

And FYI, only has the "paci" at night, and we're slowly working her off of it completely!

So there you have it! We love Minnie in this house, but none more than Emarie! What is so funny is that she only barely became interested in stuffed animals around this past Christmas. I wasn't sure if she'd ever care for the several dozens she has (most from surgeries and hospital stays. Yes, over 20 hospital stays under her belt, you can bet she's got a lot to show for it!) We're sure glad she likes them now though! Way to go Santa on getting such a great Minnie that she loves! ;)

Mommy also loves Minnie if you didn't know that already

Me as Minnie for Halloween... maybe 2001 ?? And that's my baby brother Connor as a skeleton, and my bestie Lacey as Belle (and yeah, she and her mom made that dress!)

Dressed Em as Minnie the Halloween when she was just shy of 2 (two Halloween's ago) and yes I know, she makes a much cuter Minnie than I do!

The Beauty of Routine

*Play song, "Ordinary Miracle" with this post

First off, I would just like to thank all of you that responded to my "heart on my sleeve" post. Whether it was commenting on the link from Facebook, sending me messages or emails, talking to me in person, or commenting on the post itself. I read your own stories. I listened to how you sympathized with what I was feeling. Not one of you tried to make me feel anything other than valid for what I felt, and I can't thank you enough for that. And just so you all know, the bracelet came off, last night.

Now, a lot of you have wondered how things have been going since Em has been home, and I'm here to say, that's what this post is all about.

We had a lot of great things happen:

We got shown love from friends

Busy ball from the Wolf family 

Shamu from the Soileau family

Gift basket from my Relief Society presidency

We made messes

A lot of messes

and tried to be sneaky about it all

Caught!

We went to doctor visits and were told that our child is a "true walking miracle"...... "even though she doesn't walk". That was Em's beloved pediatrician, who also stated that she's in the best health he's seen her in, in over a year, and that he was unbelievably amazed at overall how she was doing. This was 11 days after the initial scare and emergency run to Primary. 10 days after she became symptomatic with RSV. 9 days after she was placed in the PICU and put on a C-Pap. And 3 days after she was discharged from the hospital. She is amazing. Beyond my wildest dreams amazing. Hard to put into words, but best I can say, is amazing work of faith, power, God, love, everything.

We also had a visit with the eye doctor where we learned that Em's eyesight is improving. Not improvement enough to ditch the glasses (which I was happy about, I like her in glasses, if you couldn't tell from the last post). But improvements are improvements, and these days we're taking them all.

We also came to some hard decisions that utterly affect the well-being of our girl. Biggest one being to keep her away from other kids until her surgery tentatively scheduled for the middle of April. 

We purchased (well insurance did) a pulse oximeter. Which, if possible, has maybe even made us even more paranoid than we were before with the way we can see her heart-rate bouncing all over the place (as much as 60 points in a matter of seconds). Which in turn has made us return to routine specialist visits that we had kind of stop concerning ourselves with in the last year or so. 

We tried perfecting the art of self photography.... only to fail miserably most of the time!

Finally!

We showed the house a couple times, so we cleaned like crazy!

Mostly we just have enjoyed being together at home, whole and happy.

Playing with daddy

Yes, this picture was seen already, but I just love it so much!

Things have somewhat gone back to normal, and actually better than normal. It's weird how when you are so use to getting restless sleep, that you actually are more tired when you get the first few nights of the best sleep you've had in years. Emarie for the first time in well over two years, has been sleeping mostly through the night (which might be why she refuses to take naps at grandma's house during the day). Thanks in part (mostly) to the fact that she actually is keeping her oxygen cannula in her little nose. Yes, that was quite the battle before the hospital stay, which leads me to the reason for the blog title.

The Beauty of Routine

It's amazing how many things can become routine for a sweet little 3 year old. 

Hospital ones

Blood draws, IV placements, constant strangers, surgeries..... etc

Home ones

Her daily injections for growth hormone (actually laughs when given these). G-tube button changes (mommy and daddy still can't get use to these though). Keeping her glasses on. Giving of breathing treatments, via nebulizer or inhaler through spacer. Countless medications....

as sad as this is, I think it is so stinkin cute that she has a fish on her face!

The ones I thought would never become routine for her

Brushing her teeth and keeping her on oxygen at night... well, one has now become routine, but I'm not planning on the other to ever become routine..... funny how much this child goes through, yet brushing her teeth, you'd think we were killing her ;)

We were told to keep Em on oxygen when they discharged her after her hip surgery back in July. We were given a huge and horribly loud machine, nasal cannulas and tender grips.... all of which Emarie detested. We tried everything, from trying to distract her while we placed it, to waiting until she was sound asleep.... all to no avail. Well, sometimes she would leave it on for all about ten minutes, but we gave up all together after awhile because it was too much of a battle. This hospital stay completely changed that. And I think it changed Emarie's aspect on that as well.... like she knows now that it's helping her. Just like her breathing meds, her glasses, and everything.... well, except brushing her teeth. 

As sad as some of it is, I still can't stress enough how much I appreciate when things become routine.