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.

Just a bunch of GEEKS in this household now!

Play song, "Geek in the Pink" for this post

I just heart this picture :)

Biggest difference is....

These two geeks are supposed to wear their glasses all the time.... daddy geek only when he drives.

Anyway, I guess I am the newest geek in the club, got the glasses about a week ago, but probably been needing them a lot longer than that! 

Em has had hers since about fourteen months old, first seen in this post.

Steve has had his the longest (not sure how long though), and just got new ones. 

But we're all in the same club now!

And I know you're all wondering how things are going... well I'm proud to say, they're going well (in most aspects), really well. And that will be the next blog post... tomorrow, because I have a butt load of paperwork calling my name :S

Can't let this one go

Play song, "Gravity" with this post

Just to warn first off, this post is probably better fit for my private blog, but strangely, I have this strange need for as many people who are willing to read, to know this. And I know I've gained a few more followers after the nightmare of this past week. But I think it's important to write out what this week did to me, even if it's for everyone to see, because I don't think I'll be able to get passed it, or let it go if I don't.

But, in all fairness, I did warn you.

I have saved things from the hospital before. Stuff from the NICU, like her name tag, the tub she had her first real bath in, her baby bracelet, both the bracelets Steve and I wore to identify ourselves as her parents. I saved things from her first surgery, including her leads, her mask that one of the OR nurses decorated so cute with her name and little flowers, her cute little hospital socks and many other things (I don't recall all of them). I did not save as much as we began raising the tally in our surgery counts, but still saved some things. It started with one big box, then grew to two, and when it started spilling into three, I thought it was time to stop. What takes up the majority of the space by far is her casts. I did not save all of them because there were way too many. Just her first set of plaster to correct those cute crooked feet of hers. And then one of the first post-operative ones. And then a few of the cutely decorated ones (we did have fun with that, you can see on this post). I did not save her spica (3/4 body cast after her hip surgery), because for one- it was HUGE (15 lbs. no joke!), but it also smelled like death (sadly, also no joke), and I may regret that one day, but really, where would we put it?

But I could not bare to part with things from this hospital stay. Like I needed to hold on to every piece of it to remind me how close we came. It really pains me to even think this, but like I said, I have to. I don't think there's a lot that realize what a miracle it is that Emarie made it through this. Had she not been vomiting, I don't know that there would have been a concern to take her to the hospital; and 3:30 am is when her oxygen saturations dropped as low as the 30's. All of us sleeping at home, don't know that we would have known she was struggling that bad to get precious air into her lungs.

Don't think I'll ever throw this one away. A reminder of the 6 scariest days Emarie has ever spent in the hospital

Can't even bring myself to remove this from my wrist. And don't think I will be able to for awhile, every time I look down, it is a reminder of how lucky I was to bring my girl home


But I became a different person after that night. I don't think I've experienced trauma like that since the day my sister died; and I also link the two because of how my mind coped with both of them. I should have fallen apart the moment they told me my three year old would have to be taken to the PICU because she was not breathing well enough at all (her sats were in the 40's even on a mask with 5 liters of oxygen). I also should have fallen apart when they had to place a C-Pap on her to breathe for her. But I didn't, I held it together. I was numb.


It's just like after the accident and I forgot everything about it. Forgot it for years even. Until a dream one night almost 3 years later made me recall every detail. The worst being the sounds, I can't stand hearing those. I don't mind the way my mind copes, but maybe it's not a good thing. I do think I was too young to have witnessed that and comprehend everything of that day, and maybe that's why my mind allowed me to forget. But, then why do I have to remember everything now, over 16 years later? And back to today, why did I have to fall apart over everything from this past week today? At work? In front of those, who not all of whom understand or even seem to care? Most do though, I do have to say that, but even with the out poor of so many caring, why is it that one or two even matter? But they do.

This experience has made me question a lot of things. Biggest of them being: whether or not I will continue working after this school year. And whether it might be the best thing to pull Emarie out of school, and ultimately away from other children until after she has the surgery that will inevitably keep her alive. This one pains me to think about, because she loves school, I have even had a blog post in the works for sometime all about it. Just haven't wanted to share yet because it's hard to think about when she misses so much. But she has real friends, really something that I've wanted for my daughter since she was born. Not to mention she loves her babysitter, and we love her too, and the whole family loves Emarie (I'm sure you've gathered that much if you follow this blog). But I have to think about what's best for the health of my daughter. And sure it's going to be hard for us too- bouncing her around to whoever is available to watch her, the inconsistency, the stress of not knowing who will have her the night before... but we'll manage, because it's for her.

I would like to relay a comment I left on one of my Ch18 mom's shared link for my last blog post. I wanted to put it on here, because I have to admit that I'm not always like this. That most of the time I struggle with the faith end in my life. Not that I don't believe, it's not that. It's because sometimes it's easier to be mad, and question, and scream to the heavens to please don't let her suffer anymore. Hard to admit, but I did all of that in the past week. But, you should know that it's not always like that for me. And a lot of you helped with that, so here's what I said:

Oh, and you should know, that this particular fellow Ch18 mom had been asking for prayers on our daughter's behalf (like many were, really was amazing and humbling to see), and posting the links for people to send us messages through the hospital. So again, I thank all of you.

Ok, now here it is:

Thanks everyone!! You have been an amazing uplift through this whole ordeal!! I look back on it now and realize how lucky we were that our girl even made it through alive. Prayer is powerful, people who have faith are powerful, and unconditional love is powerful. You showed me all, thank you, thank you! ♥


I have always known what a true miracle my Emarie's life really is, but I think someone must think I need to be reminded of that a lot. So maybe now if I write it out, they'll know that I do know it. I know that every second I am with her, I am with a true angel. And now I am screaming that.