What a day!

The surgery process has begun.  It's challenging. 
The hospital is awesome!  The areas we will be in the most were built 2 years ago and everything is shiny and brand new!  It's beautiful and the people are so nice!  Ella walked in this morning ecstatic and ready!  Everyone was really impressed. 

The CT scan went well.  Joe and I were with Ella while they put her under with gas.  Joe almost hit the ground, but we kept him up!  Ella did great through the CT and they even drew her blood so NO POKEY's tomorrow!  I almost hugged them when they told me that!  We also finished all the registration for surgery, so we have one less appointment tomorrow.

After the CT was HORRIBLE!  Ella did not come out of anesthesia well.  She was screaming, crying, and throwing her body around.  One of the hardest moments as parents.  Joe and I just looked at eachother and took turns holding her.  Ella gets mad when not EVERYONE is around.  They only allow 2 adults in many areas, so we just take turns.  She slept it off for 2 hours and woke up herself.  What a relief!  My mom told her she was back to herself and when Joe came back she said, "I'm BACK!". 

We had the grand tour with child life and they gave Ella a surgery video.  She watched it 6 times in a row when we got back to the room!  They even had a play operating room with the huge lights that Ella could turn on and off.  She was still pretty sleepy, so it wasn't ideal, but helpful.  We saw the PICU and the floor she will be on.  She smiled at all the nurses and said, "see you Wednesday".  They have  statue of Mickey and the Chipmunks.  She doesn't even know them, but she gave them each a hug and kiss and said, "see you after my surgery" after she explained to them that she had to go have surgery first. 

We took her out for macaroni and cheese and then had a relaxing afternoon (as much as possible).  I took a much needed nap and woke up a bit more civil.

Overall, it's tense!  I'm overtired, Ella and Joe don't sleep any better.  It's hard to be so far from home and the anxiety of the unknown is just plain hard!

An awesome basket of cookies arrived for Ella and she was thrilled beyond belief!

The OR is booked for 5.5 hours for Ella.  It's going to be a LONG day on Wednesday!  She can have clear liquids until 10AM and then NOTHING and we have to be at the hospital at 10:30 in case the 1st surgery is done early and maybe she can go in earlier.  There is a great playroom and I'm thinking a contant rotation the 4 of us will keep her going and not wear any of us out too quickly!

Surgery is scheduled for 1pm. 

We have a long day of appointments tomorrow, but it's awesome that we got some out of the way today.

No fooling Ella

We arrived in Dallas and things are going well. Our afternoon and evening worked out as planned.
Last night was so sad. Ella could not settle down! She is a stress case like the rest of us! She cried, "I just want to go home"! This is not our usual Ella who is begging to go to a hotel.
She KNOWS why we are here. I wish I could offer her more comfort, but the truth is reality of some very crappy days ahead!
Rides and entertainment will be a great distraction today and hopefully a day of fresh air will help us all sleep easier tonight!

French?

We're awesome!  Joe and I parked Ella in front of Toy Story and we're getting our crap together!  I walked by the living room a few times and thought it sounded strange, but didn't do anything about it!

As the movie is almost over, Joe realized she's watched the ENTIRE movie in French.

We're awesome like that.  Overwhelmed and stressed....YES!

We love you Dino Class!

Ella was so excited to show me this card when I picked her up the other day!  Her teachers did an amazing job!  These kids LOVE her and it's beautiful!  She has such a neat class and I'm so thankful for each of them!

This 3 foot tall card will be coming to Dallas and will hang in her hospital room! 

Denied

My 1st appeal with my insurance company was denied.  It hurts.  It really hurts!  With all the data and support letters and all my hard work, how could they not approve payment?

As they likely suspected, I'm ready for 2nd appeal!  She had my "2nd appeal in writing" within about 30 seconds of informing me of denial (thank you email)!

I will plead my case to a review board on May 10th.  I'm putting them on the back burner for the the next 10 days.  I'm giving myself time to get home and settled and then I'll get my case ready!

BRING IT ON!  I manage to always keep my composure on the phone and my friends/colleagues are always amazed, but I'm not quite sure how the "in person" part of it will really go!

We're getting there!

The laundry is done.  The mail is stopped.  I have piles of clothes that I'll go through tonight and decide what will make it into the suitcase!  Ella is in charge of packing a few stuffed animals (barneys).  Joe's in charge of the movies/electronics!

It will be a busy day at work!

Ella has been promised a movie night so Joe and I can finish packing!

Still not real, but we're going to Dallas!  I've waited so long for May to arrive!  We have a few days of fun and I'm ready!

I'm working hard to embrace Joe's philosophy....."if you forget it, there's always Wal-mart or Target"!

It's teacher week

Since I don't have enough on my plate....it's teacher appreciation week at daycare!  Usually we get a letter in advance, but this year it was written on the white board on the way up the stairs on Monday.  My first thought....CRAP!

I had pinned this idea long ago.  There was a great sale on the cups and I filled with some crystal light lemonade mix and attached a card. 

Not my best effort, but I think it will be appreciated.  I can't think of a single gift to truly express how wonderful these teachers have been!  Ella is LOVED, she learns a ton, and they put up with her feistiness!  They have been completely supportive of all of our medical drama and they are my angels when I'm at work!

One more week....

I mailed this card to family with packages for Oreos. Prayers for safe travel, surgery success, and the best outcome for Ella!  Treat yourself to a package of Oreos and say a prayer for all of us!

Our gem

We were bummed when Z Pizzeria closed.  It was a nice pizza place a block and a half from our house!  A few weeks ago a new gem went it.  Per Noi Trattoria.  We've been wanting to go, but have little desire to take Ella to a white table cloth kind of restaurant.  It's quaint and it's our neighborhood and she's wild!

We went tonight because no one should cook on their anniversary!  It was AWESOME!  We had the restaurant to ourselves for the first bit, but it was filling up as we left.  Our food was GREAT! 

Yay for this gem!  The owner/chef was our server and it was a fun experience.  He went out of his way to make chocolate milk for Ella and she was thrilled.

I may pass on all trips for ice cream and walk down to Per Noi for one of their desserts instead!

To my Mista's - they have a "Mista" salad.  Mike and Cindy - go try it out (if you haven't already been)!

Surgery/Insurance Update

I have gotten questions and emails about what is going on!

Here's the latest:

Appeal Step 1 is in process. I made calls every day last week and my letter is in as well as 3 physician letters in support of my appeal. I have a hard time understanding how anyone could refuse payment after all the work I have done and data to support our decision!  I feel I have a strong case, but I've been warned the answer to the 1st appeal is "always" NO. I'm hoping to have an answer on Friday and I'm prepared for "no" (but I'll still cry) and I'll move on to Step 2 of appeals. Surgery will happen next week and we will keep fighting for payment.

Ella is anxious! She says her stomach hurts and she has the hardest time sleeping (we are all insomniacs lately)!  She wants to tell everyone she is is having surgery including the clerk at the grocery store, our pastor, parents of kids in her class, people next to us in the restaurant! It's on her mind and she's ready!

We leave for Dallas on Saturday. I'm hoping for sunshine and pool time on Saturday. Sunday we are going to Six Flags. She's been begging to go to Disneyland and I'm hoping the rides are what she is yearning for more than seeing characters! There are a few different roller coasters she can ride and she LOVES that!

Monday we have a sedated cat scan. It's hard because she won't be able to eat, but we will do something fun afterwards! Ice cream or slushies for lunch! In the afternoon we have a meeting with child life and I'm excited for Ella to see the surgery areas of this hospital.  She's so comfortable with surgery here, and talking about a new hospital is the hardest part for her to understand.

Tuesday we have appointments from 9AM to 5PM or later! We meet with everyone from an anthropologist, media for preop photos, neurosurgeon, registration, lab including blood draw, and Dr. Fearon. It will be a crazy and challenging day with a high-energy child!  Let's hope Nana Di, DVD player, ipad, smart phones can provide enough of a distraction to keep us all sane!

Wednesday is the big day! Ella will get to drink clear liquids early in the morning, but then it will be 3 long hours of NOTHING to eat or drink. We report to the hospital at 10:30 and surgery is scheduled for 1PM Central Time. I anticipate 5-6 hours in surgery. She'll go to the Pediatric ICU for the night and hopefully to the floor on Thursday. We expect to be discharged on Friday! We'll be in a hotel for 2 nights and then we fly home on Sunday.

What a crazy whirlwind!  It's so exciting, but yet scary.  It's a really big deal surgery AGAIN!  I feel like surgery gets easier and easier, but now we are all out of our element!  I talked with one of the child life people at work today and she agreed I'm doing all that I can to prepare her!  Her son is in Ella's class and she has a connection with Ella. 

The insomnia is killing me!  I go to bed early and I wake up about 4AM every day.  My mind just races!  At least I've done all that can be done for the appeal and now I just wait.  It's out of my hands for now.  Packing is stressful.  I can't bring everything and I can go shopping if I forget things.....but I want to do my best!  At least I'm accepting that doing laundry will happen!  I keep worrying that Ella is going to freak out because we forgot some random stuffed animal that she will decide she HAS to have and it will be something I can't go buy!

Happy 7th Anniversary!

Wow!  I never would have guessed this is where Joe and I would be 7 years into marriage!  Utah?  A beautiful, fiesty, keep-us-on-our-toes little girl, loss of loved ones, medical STRESS, job stress!  What doesn't kill us really does make us stronger and continues to bring us closer together!

We've had our challenges and we've had our celebrations!  All in all, he's my best friend and the most awesome father I could ask for.  Thanks for making me laugh (even when I REALLY don't want to) and constantly reminding me that things really will all work out!

I love you more!

She's breaking my heart!

Out of nowhere this afternoon Ella said, "Did you have surgery when you were a little girl?".

I almost cried!

Arggg... Mason is 3!

The pirate party was awesome!  Ella was dressed and ready to go at 7AM!  We held her off until 10, but she brought the energy!

Thanks Marlow for a fun morning!

After walking the plank

Ahoy!

LOVE the pink patch for the only girl!

Making pirate hats

Walking the plant some more and jumping into the "water"

Cake time!  They relit the candles so all the kids had a turn
to blow out the candles! Thanks Grandmas!

Is that my child actually eating cake? 



Happy Birthday Max!!!!
He must have a brother, he KNEW how to eat his cake!

Yellow Flowers

Ella just LOVES yellow.  The dandelion is currently her very favorite flower!  We don't have a single dandelion in our front yard, but the neighbor sure does.  She just BEGS to go pick the pretty yellow flowers and I've been telling her you just can't pick any random flower.

She really wanted to bring me a "flower that you can blow", so we each spread some dandelion seeds in our front yard yesterday....

Presents

When I picked Ella up from school she told me she had "presents" for me.  Most parents would guess their child made an art project.  I think she said something about a stick and some sand and I figured it was in her coat pocket.  I am often given dirt or rocks!

She didn't bring it up again.  I changed out of my work clothes and said something about taking my shoes off.  She thought it was a great idea.  Then she gave me a small stick and a shoe full of sand!  She was thrilled!

She is so sweet.  She LOVES the sandbox at school and just wants to share a little of it with me.

TGIF

Yay!  Friday is here!  Stress insomnia is killing me.  I've been up by 4AM every day this week. 

I'm looking forward to going to bed early, a pirate birthday party, an opportunity for Ella to see Belle and Cinderella, and a NAP for me! 

My goal is to begin packing for Dallas...but we all know I'll still be doing that until the second we leave for the airport next week!

I'm ready to get through my work day and let the weekend begin!

Good Morning to you too!

My morning began at 3:45AM when Ella woke up crying!  I ran in, covered her up, found her stuffed animal and she was OUT!  I tossed and turned and got up at 4:30AM!  Awesome.....at least I got some stuff done!

Ella got up early, but she was in a great mood.  We were out the door by 6:20 and the drop off at school was awesome!

I was early to work and I knew it would be busy and my colleague was off, so I was ready to tackle the day!

The pharmacy student arrived.  He wasn't organized to have his paperwork done in advance to have a log-in to our system, so I had to help him print his paperwork for rounds (in addition to doing the job of 2 people).  Within the first 3 minutes.

Student while reading an email explaining that I would help him: "I thought your name was Laurie, why do you spell it like that and still say your name is Laurie?"

Me:  "I'm from the Midwest!  Yes, that's how I spell my name and it's prounounced LAURIE!"

I've had the hardest time with explaining my name since living in Utah.  Really!?!  Laurie is just like Lori, just spelled the long way!  My mood is quickly fading!

Student, "where did you go to school?"

Me, very proudly, "The University of Iowa".

Student, laughing, "there's a whole lotta nothin' to do there!".

ARE YOU KIDDING ME?  The morning continued as he continued to find ways for me to not like him!

The next few days are going to require a lot of deep breaths and patience for me to precept this PUNK! 

What's with students these days?  Did they stop teaching and enforcing professionalism???

An apple a day...

Joe brings Ella a "treat" every time he picks her up from daycare. Usually something sweet, but not always. SHE determines whether it is a treat or a snack and strongly lets us know! I don't bring a treat.

Yesterday on the way out of school she scored big with a bag of teddy grahams instead of the usual crackers. She was super excited, but when we got in the car she said, "Did you bring me a treat?". I informed her that I don't bring treats!

She was mad! She asked me what was in my lunch bag! I had a random apple I hadn't eaten. I offered and she was pumped!

Ella: "This is a treat!"

Me: "Great, fruit makes a great treat"

Ella: "You always have to eat the red part. It has the vitamins"

Me: "Really, who told you that?"

Ella: "Miss Margie"

Me: "Wow, she's really smart! Is Mommy as smart as Miss Margie?"

Ella: No

I think back to elementary school when I thought all my elementary teachers were the smartest people on earth! Ella is already there! We are constantly hearing, "my teacher says...."! Yay for teachers!

When I'm stressed...

I eat....but I also make photo books!  I had a Picaboo deal that expires shortly after Ella's surgery.  I didn't have a book in mind.

I opted to make Ella a book.  It's the "I'm going to have my head fixed in Dallas" book!  The cover is yellow!

It tells a story and I plan to read it to her to prepare for surgery.  It has pictures from past surgeries (I had LOTS to choose from, unfortunately). 

Ella is a whole year older, 50% older and it will again be a new experience for her.  She keeps saying she's having surgery at "mommy's hospital" and it breaks my heart that it isn't that easy!

The book is honest.  We will have fun in Dallas!  We will have LONG days of appointments, pokey's and a CT scan and she has to be patient and listen.  She won't be able to eat or drink before tests and surgery, but when the CT is over, we'll go get slushies!  She will hurt, but she can ask for medicine.  Her eyes will swell shut, but the book reminds her WE WILL BE THERE to hold her hand and keep her safe!  There are pictures of us holding her and promises that we will hold her whenever she wants to be held.  The pages progress through the swelling and discuss eating and drinking so we can go to the hotel and then home!

I left some pages blank at the end for people to write notes to Ella.  I know she will steal hearts quickly with her comfort and bossiness in the medical world!

It's all becoming so real.  We have a lot to prepare for.  Sadly we are fighting an insurance war at the same time, but not sharing those details with Ella and trying hard to hide the stress!

At the end of the day, Ella smiles and says, "I'm going to be a doctor and fix heads".  I smile back and say, "you can be whatever you want to be and you will be awesome!".

I love you, Miss Ella!

I'm on the Appeal

I have spent at least 20 hours a week the last few weeks on the phone to our insurance company or the offices of providers for Ella in Texas.

On Tuesday I was informed of a coding error.  Ella's case was moved to step one for re-review and it did not go well.  I will never understand why this had to happen and I have to move on and fight.

I've been working closely with Dr. Fearon's office and they are helping me write my 1st appeal letter.

The good news is that the surgery has been pre-approved and we can move on with the surgery.  The bad news is the level of payment that it was approved at is very weak! 

I have done my research.  I have clinical data to back up our decision to take Ella to Dallas.  I am a FIGHTER and I do not give up easily! 

I have a new case manager at the insurance company and I look forward to talking with her this week.  I had the most ackward phone conversation with our old one when she tried to call me Ella on the phone and I misheard her name at the beginning of the call.  I actually said, "oh, you must be my new caseworker?".  Imagine my embarrassment when I found out it was the old crappy one who still didn't know my name!  She sure did become helpful the last few days after my conversations with her boss!

The good news is surgery will happen.  Ella will have a closed skull and we can move on with life as a regular kid!  Joe and I will continue to fight for payment and if all 3 levels of appeal are denied in this process we will continue to work with Ella's providers to fight for more money once the bills roll in.  Dr. Fearon's office and some of the other providers are willing to go through 3 steps of appeal for more payment after the fact with my help.  I'm prepared for this process to take another 6-9 months!

I plan on my first appeal letter to be sent on Monday afternoon!  It's currently 12 pages including supportive documentation and references! 

Doc McStuffins

It's new on Disney Jr.  Have you seen it?  Ella and I watched the first episode this morning.  It's super cute!  It's PERFECT for Ella!

We learned words like Stat and Discharge to home.  All the characters are cute and everyone is fixed up by the end of the show!

The Negotiator

We've joked for a while that Ella needs to work on her negotiating skills! 

Almost every night, we sneak out of her room with a promise of coming back to check on her.

Me:  I'll be back to check on you in 3 minutes
Ella:  No, check on me in....5 minutes, no 8 minutes!

Silly girl!

Yesterday she badly wanted some Easter candy for the car ride to school.  Yes....we let her have candy in the morning!

Me:  you can choose ONE piece of candy from your basket to eat on the way to school
Ella:  I want 2
Me:  Your choice is one or none
Ella:  I really NEED these 2
Me:  One or none, it's TIME TO GO!
Ella:  How about 3?  With the cutest voice and puppy dog eyes!!!!

Joe and I lost it....she's finally figured it out!  I could see it in her eyes....maybe if I try for 3, I'll get the 2 I want!

She left with one piece of candy, but we all had a good laugh!

Kitchen Drama

We'd LOVE to remodel our kitchen.  It's not in the cards!  We've recently decided to stay in our house.  The location is too valuable to us and we'll deal with the layout and the fact that it's 100 years old!  We had hoped our appliances would hold out, but hours after I said, "Let's just get a new stove", the dishwasher went out.

Stove has been replaced and works great!

We measured and measured and measured and researched to find the perfect size dishwasher!  Our counter height is not standard.  At first glance the only ones that would fit were in the $200 range and I knew that wouldn't work for our family!  Finally I found one!  It was 33.5 inches in height!

I sat home on Friday waiting for the delivery in the morning.  In the afternoon the plumber was coming to install the dishwasher.  The first thing he said was, "it isn't going to fit!".  I was mad.  I'm not an idiot!  I measured, I researched and I verifed with the salesman that it was 33.5 inches!

It wasn't!  The damn thing was almost 35 inches!  Why on earth would a website allow me to search by height and be wrong AND the store be wrong?  From now on I will measure MYSELF in the store!

I wanted to cry!

I went back to the store and we found one that will fit.  FYI - shorter dishwashers are labeled "ADA" for American Disabilities Act and are about an inch or 2 shorter than standard, but regular dishwashers. 

We've eaten out all weekend because our kitchen is a disaster and the dishwasher that doesn't fit is in the middle of everything!

Thankfully I don't work until 12:30 tomorrow and I'm able to sit home and wait.....

I hope it goes smoothly and I can't wait to run a load of dishes.  I grew up handwashing and I HATE IT!

Ella 3 & 1/2 year photos

Remember the great photographer I posted about?  We picked up the pictures Friday night.  They are awesome!  He captured ELLA.  This was one of the best photoshoots we've done.  He's very professional and has a ton of experience.  I randomly bought a "great deal" on citydeals which I had intended to use for a family shoot, but then we had a friend do it.  We were originally scheduled for a Monday, but he cancelled which was a blessing.  Ella was sick and the weather was terrible.  It all worked out and now my mantel looks awesome!  Family who ordered.....your pics will go in the mail tomorrow!

Happy Easter!

Remember the winter coats we were wearing yesterday?  It's Utah.  Today was sunshine and almost 80 degrees!  We should have set the alarm....we were late for church, but we made it!  Brunch at Grandma's house followed by gifts and an egg hunt.  Then we went to the zoo and enjoyed the perfect weather!  We ended with a late lunch at the Copper Onion.

We came home and watched Monsters, Inc on the couch while I dozed off!

We are very blessed this Easter! 

FYI:  I forgot the nice camera and the little camera is dead.  Phone pics will have to do! 

Happy Easter!

Easter Egg Hunt

Hugs for the Easter bunny!

A quick pose then she verified that he will stop by
our house tonight!

Wilbur from Famous Dave's

We met Ella's friends Avery and Abby

Ready for the hunt

Super excited

The waiting....

There she goes!

It didn't take her long to find 6 eggs

The goats were her favorite!

Joe joined us after his morning meeting.