Saturday, September 28, 2013

What Happens In Vegas...Is Really Not My Thing

It's my birthday today.
My 38th birthday.

I've learned a lot of things about life in the last 38 years.

Today though, I've learned something new.
Maybe it's not new...let me try this sentence again.

Today though, I've relearned one of the most important things there is to learn.

We're on the 42 floor of the Palazzo Hotel and Casino in Las Vegas.
It's the nicest hotel room I've ever stayed in.
I can look out our huge window and see the lights of the Las Vegas strip below.

Jason and Emily and I spent a few hours walking along the Vegas strip...we had a destination in mind but it was a lot farther away than we had planned when we started our sojourn.

We saw every type of person - saw more alcohol than I have ever seen in my life - and saw pictures thrown on the ground that can be described simply as pornographic.

We walked through casinos that were filled with people gambling and rode an elevator with some very drunk people.  It was in the middle of the afternoon.

Tonight we went to dinner with Jason's co-workers and boss, and when Emily let us know that she was done with her day, she and I left dinner.  Em kept her head on my shoulder as we walked back through the casino to our hotel room, and we both breathed a sigh of relief as we walked into our room and left Las Vegas outside of our door.

Jason's co-workers expressed sadness that I left my birthday dinner before my food had even arrived but Jason knows me and said, "Trust me.  She's okay with this."

I put Em in the bathtub ... mostly because I felt like I needed to wash this day off of her ... and as I watched her splash and play in the water I thought about things.

Every person who saw Emily smiled.
You could see the hardness of some people literally soften as they looked at my little girl.
Many people commented on how sweet she was.
The hotel staff wave and smile whenever they see her.

Emily represents the polar opposite of this city.
She's pure and she's innocent.
She's filled with peace - and light - and goodness - and people are drawn to that.

Tonight after Jason came back I ran a hot bubble bath and soaked in the dark as I watched the season premier of Gray's Anatomy on my iPad.

And afterwards, I sat on my bed with Emily asleep next to me, and the lights of the city outside my window, eating my birthday cheesecake.

All I need in my life is inside this hotel room.
The kind of joy and happiness that comes from winning a few dollars in the casino or that comes from the buzz of alcohol?
The happiness that comes from living the high life?
It's not lasting - and it's not real.

I will take my life -  my simple, quiet, clean, wholesome life ... and I will thank God every day for it.



Wednesday, September 25, 2013

The Countdown To Disneyland Has Begun

We've been teaching Emily sign language,
It might not be a version of sign language that the rest of the world understands, but we do: Emily, her daddy and me.
Emily's cousins and aunts and uncles are learning it too...and so are Grandma and Grandpa.

I bought a book today so that I could learn the real words, although the ones I make up are pretty darn clever.  You should see Em...she takes the words I've made up and then makes up her own version on top of that.  It's adorable.

Here's our list so far:

Mickey Mouse
Little Einstein's
all done
thank you
please
help
open
in

People melt when Emily tells them thank you in sign language.

Last night Jason and Emily were playing in our room while I was packing for our trip in Emily's room.
(We're leaving soon for a two week vacation to California.)
Jason was playing the guitar and singing to Emily.

At one point I heard him call into me, "Noelle, what does it mean when Em shakes her hands?"

"It means all done," I called back.

He cracked up and said, "I guess Emily doesn't want me to play the guitar anymore."

And she didn't.  She wanted to watch Mickey Mouse.

That girl...we love her a little bit.

Em's been sick for forever, and my attention has been focused on her more than on writing anything...I'll try to be more involved with this little space that is mine.

Thanks for checking in on us!

Thursday, September 19, 2013

Shh...


Would you like to see a glimpse into a secret corner of my closet?


The binkys have long been chewed through and cut off of the elephants, but I can't part with the elephants.



Monday, September 16, 2013

Freedom


In the form of a backpack.
A little person's backpack that I found online.

Our girl loves it and loves even more that she can go anywhere she wants, even when she's being fed.
And even better?  Jason and I have added three hours to our day because of this backpack.








And here's a picture from the past, just because I love it.
And I love her.


Here's something you might want to know.
For an entire week I asked Jason to find the cord for the camera so that I could download these pictures to my computer.
Every day.
For an entire week.

Saturday night I sat and went through my box of cords (being married to Jason = lots of devices which in turn = lots of cords.)

When he came upstairs I said, "I have good news and I have bad news."

"The good news is I found the cord.  The bad news is that your wife is dumb.  Really dumb."

The cord was there in the plug, charging my camera all along.
I didn't know the cord could be used for both charging and downloading.

Yes...feel free to roll your eyes.
I did.
I'm sure that Jason did.

Tuesday, September 10, 2013

It's Been A Day



I have a customer who owes us a lot of money.
A LOT of money.
He pays on his terms - when he's good and ready - and nothing I say or do will change that.

I've been sending regular texts to him, reminding him that I need a payment.

His response to my last text:

(the white bubble)


In respect to my mom's sensitivity I will refrain from telling you what I said in response.
But it involved a three letter word that starts with the letter A.

And now I will go and indulge in the piece of chocolate cake my mom left on my desk this morning.



Sunday, September 8, 2013

How I Spent My Weekend


BEFORE




AFTER



I need someone to send me a regularly scheduled memo that says simply 
'Emily does not need more toys.'

Wait.
Send it to me after I get what I really want to get her for Christmas.


Thursday, September 5, 2013

A Little Hello



Hi World!

I've been having lots of fun with Mommy while my daddy is off backpacking in the mountains.
He's been gone all week and I really miss him!
Mommy says unless he fell off of a mountain peak he will be home on Sunday.

World, guess what my mommy told me today.

In just a few weeks Mommy and Daddy and Aunt Becca are going to take me to Disneyland!
That's where Mickey and Minnie Mouse live!
I'm so so so excited!

Mommy says that we get to go and stay at a beach house for a week first - in a place called San Diego.
I think I will love that too because we will be right by the ocean and Mommy says the ocean is more water than I have ever seen in my life!
Mommy told me that I will have to wear a life jacket and I told her that as long as it was cute I wouldn't mind.

Water and Disneyland!
I'm one lucky little girl World!

I'm going to go now and climb all over Mommy and throw all of her papers off of her desk - that's my favorite thing to do.

Bye World!




Sunday, September 1, 2013

Where I've Been

Every month for the last two years I've gotten the same phone call.

"Hi Noelle.  This is _____ , pharmacy technician for Intermountain Home Health Care, calling to go over your order for Emily's feeding supplies."

We go through the list and on occasion I'll change the number of syringes they send, just to keep things interesting.

I got my usual phone call two weeks ago but this time there was a twist.

"Noelle, the formula that you've been giving to Emily has been discontinued and our dietitian will call you to go over the options you'll have for a different formula."

"It's been discontinued or you've stopped carrying it?" I asked.

"It's been discontinued.  You won't be able to find it anywhere except maybe Amazon, but that will only be until they run out."

Oh for the love... that's what I was thinking.

After hanging up from that conversation I called Gerber, the company that makes Em's formula.

"Can you tell me if you've discontinued this formula?" I asked.

"Hi thank you for calling.  I can help you with that.  No."  That is the conversation I had with the Gerber company.  Word for word."

"Do you have any plans to discontinue the formula?" I asked next.

"No."

Oh for THE LOVE... that's what I was thinking next.

I called the home health company back and asked to speak to the same technician.

"Gerber is not discontinuing the formula," I told her.  "Can you tell me another reason why your company would choose to no longer carry this formula?"

"Oh ......... (long pause) ..... I'll have to call you back."

She did call back an hour later with a new explanation.

"The formula you have been using is one we have to special order - we don't keep it in stock normally. Now that Emily is two we feel that she is old enough to use other formulas - those that we keep in stock.  It will save us a lot of time and hassle to send out formula that we already have."

OH FOR THE LOVE ...

"And you made this decision without thinking to talk to me first?  Without talking to Emily's GI doctor?  Without taking to her pediatrician?  Without talking to anyone who knows anything about Emily?"

"Well, our dietitian will call you in the next day or two and discuss your options with you."

"What if I don't want another option?  What if Em's doctors don't think another option is a good idea?"

...long pause and then, "I'll have the dietitian call you.  I'm sure you'll work something out."

Three days later when the dietitian called I had a similar conversation with her, only I added a few more details.

"Do you know that Emily spent three months in the hospital because her gut didn't work?"
"Do you know that Em's gut couldn't tolerate food at all?  That she was given nutrients through an IV to bypass her gut altogether?"
"Do you know that my daughter went through hell for an entire year because she couldn't tolerate the most basic, elemental, easy to digest formula that there is?"

"And now that we found something that works you're telling me you're going to switch it?  Because you don't want to fill out the paperwork to get it ordered?"  "And you were going to switch it without consulting a single doctor?"

World, I was NOT a happy customer.
I didn't raise my voice - not once - but I did have a tone - a strong one.

The dietitian switched the formula anyway - and she sent the new formula out with instructions on how much to give Emily.

The calorie content jumped significantly - and the volume increased too.

I called both the pediatrician and the GI doctor to ask for suggestions.
The pediatrician was appalled that they would make a switch, and the GI doctor was okay with giving it a try.
But both of them told me to dilute the formula - to give her less calories than the dietitian had suggested.

We tried it for a week.
In the middle of the week the dietitian called to follow up and when I told her what we were doing with the feeds she was bothered.
"I don't pull these numbers out of my head," she told me.
"They are the guidelines that we follow for all of our patients.  These guidelines are tried and proven."

Tried and proven on someone other than Emily and her sensitive little tummy.

But by the end of the conversation I felt like I had been wrong for disregarding the dietitian's guidelines and Jason and I agreed to try her suggestions for a day or two.

A day or two was all we lasted.

Our poor girl has been miserable.
Not only was she throwing up, but her gut stopped working.
She couldn't digest the formula we were giving her - her body simply couldn't handle it, and by the fifth  day of the new formula Em was exhausted from the effort of trying to manage the change.

Last night Jason and I switched back to the other formula, the one that our little lady was thriving on.
On Tuesday I will email the home health company and express my frustration about what I feel is a total lack of professionalism and concern.
In fact, my dad told me that I had better read them the riot act.
If after all of that, they are still not willing to work with me on the formula I will call and ask that the GI doctor fight this battle for me.
If that doesn't work, I will call the insurance company and ask if we can bypass the home health care company completely.
And if they say no and tell me they won't work with us...

"and if that billy goat runs away..."

Well, at that point Jason and I will work Em's formula costs into our budget, and we will tell the dietitian to take a hike.
And maybe we'll even have a tone when we tell her that.

It's been a long week World, and this Momma can barely keep her eyes open.
Em is asleep next to me, and now that she's back on her magic formula she will sleep through the night peacefully.
She needs it.
I need it.

Oh...here's one other thing.

During one of our conversations, the dietitian said to me in a surprised voice, "You seem like you have a very hands on approach in regards to your daughter's care.  I guess you like to know what's going on?"

Oh for the love...