About Us

This blog is changing, just as our family is changing. It was originally started to keep in touch with family and friends far away, but when you face a life altering disease EVERY aspect of your life is changed and in some way effected by it. Now I need a place to vent, to share, to help people understand the struggles that we face as a family with 2 children that are struggling with the Disease Eosinophilic Esophogitis, and with all of us having multiple food allergies. So this blog is becoming my journal so to say, an outlet for me to express my frustrations, share my joys, and put all information into one place for those that want to know. Why share something so personal, and often too hard to bare? Well...so much of this disease is silent. We work so hard to help our kids lead a normal life and no one sees the struggles faced daily, and I think it is important to let people know and understand.

What is Eosinophilc Esophigitis?

What is Eosinophilic Esophogitis? Also known as EE, or Eos, or EoE.

First let's start off by saying, there is NO CURE! There is NO FDA approved treatment. And often the only form of successful treatment are large doses of steroids and/or elimination of "trigger" foods, which sometimes as in the case of our 2 boys is an elimination of ALL foods. Forcing them to be on an Elemental Formula ONLY diet and water.

Second let's start with the layman's definition as I know how to explain it, and then I will add links with better medically explained and more in depth definitions. Eosinophils are a form of white blood cell, and in persons with this disorder these eosinophils attack food as if they are a parasite, causing damage to nearby tissue in any part of the digestive tract (in our case the Esophogus). This causes reflux that often does not respond well to reflux meds, vomiting, pain, aversions to food, rashes, diahrea, constipation, and many more symptoms like leg and joint pain, headaches. All of which these symptoms lead to more and more problems from which many you will learn about by reading my posts.

One of the bests places for accurate up to date info go to: Apfed, http://apfed.org/drupal/drupal/index.php

And of course this blog reads most current posts first, so I'll do my best to label important posts to help you catch/keep up.

Wednesday, December 30, 2009

A Few Cute Christmas Stories

We sat down Christmas Eve with our Christmas books and scriptures to tell the Nativity story. Isabelle had her little people nativity set so that she could follow along. As we were starting the story, she quickly took over telling the story. It was adorable! She took her little figures and had Uriah and I pretend to be the innkeepers and say, “No Room”. She then continued to tell the whole story. Did I mention it was adorable?!
She did the Nativity Play in Joy School, and she was quoting much of the play word for word. (I would have added the play video clip a while ago, but it was too long.) We then had to all sing “In a Little Stable” I guess we are doing something right as parents. It was a really sweet experience and it felt good to know that she truly understood that Christmas is more than just presents and Santa.
We were also getting ready for Santa that evening. She had been saying for a couple days that she was going to wake up and see Santa. As we were trying to explain to her that Santa is so quiet that she wont hear him, she replied, “So, but I’ll hear his reindeer on the roof going clip clop clip clop! Reindeer are loud.” She said it so matter of factly and I guess you can’t fault her logic. I can’t even count all the songs, stories, and movies that mentioned reindeer paws on rooftops! One of the presents we got for Isabelle were movie tickets and a promise of a Mommy Daughter Day to go to the movies and see the Princess and the Frog. She had been asking for a while to see it and didn’t understand why we couldn’t just get the movie from netflicks. After the movie I asked her if she liked her Christmas present and the Mommy Daughter time. She sweetly, truthfully responded, “Yes, but I really really love the present Daddy made me, and Abinadi loves it too.” Awwww! I’m not the jealous type when it comes to the love and appreciation in our family. It just truly touched my heart that Isabelle really loved and appreciated the cradle that Uriah made for her. I couldn’t wait to hurry home and tell Uriah what she had said.
This is Isabelle reading to her "Baby Pinkie" in her Daddy's Gift. I am so blessed to have a husband so talented to be able to make a cradle from no plans in a day, to make this Christmas special for our daughter.


This is why Isabelle said that Abinadi loved the gift also. He wouldn't stop climbing in and out of it. He would throw Isabelle's dolls out, and grab a toy, or my shoe, and climb in and sit. He was having a blast!

Hope your Christmas was as special and full of love as ours was! We missed all of you at this special time!

With Love, from the Orlands!

Sunday, December 20, 2009

The Reason for the Season

To help us all remember the true "reason for the season" (Hee Hee, I've heard that saying a million times this Christmas) Isabelle wanted to sing her favorite Christmas song. Translation below.

"In a Little Stable, far across the sea,

was a little baby just like you and me.

Shepards stood around him, Angels watched with care.

For the Babe was Jesus lying smiling there.

Ding dong, ding dong, Christmas Bells are ringing.

(These words were skipped...Ding dong, ding dong happy children singing,

Ding dong, ding dong. What do all the Bells say?)

Ding dong, ding dong. This is Jesus Birthday!

Merry Christmas


She surely looks and sounds like an ANGEL...but is she?

Saturday, December 12, 2009

Alaskan Thanksgiving

We had a lot of SNOW this Thanksgiving Holiday. (Not much since oddly enough) We spent a quiet weekend at home playing in the snow. It was lots of fun with plenty of leftovers. Eventually we hope to figure out a made from scratch stuffing recipe, maybe next year. Maybe we need to try it more than once a year!

Be patient with the Snile Box Please. It's large but I think it's darn adorable and worth the wait!

Click to play this Smilebox scrapbook: Alaskan Thanksgiving
Create your own scrapbook - Powered by Smilebox
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Uriah and I also celebrated our 7th Anniversary. Can you believe it? 7 years, it's amazing how time flies when you're having fun and enjoying life with your Best Friend! I am looking forward to an eternity of years with you! I love you Honey!

Thursday, December 10, 2009

This is why…

No matter how tired and sick you feel, you do not ignore checking on your kids when they get “too quiet”! I was just hoping that for once they were quiet because they were getting along. Well I was partially right; they were getting along, just getting along making a huge mess!
This was 1/5 of our carpeted dining room floor, the entire room plus parts of the living room and kitchen were covered with half of a large box of Rice Chex.
To make matters even better, I broke the plug on my vacuum yesterday!

Blessings in Disguise...

...AND OH BOY WAS THIS A GOOD DISGUISE!
Well I mentioned before that Abinadi just had his first birthday. We had all these great plans for a party and a birthday cake and we were going to let this be the first time that Abinadi got to try butter for the first time to see if he would react...but then everything went wrong! I got so sick the weekend before his birthday. (That's how we knew!) And my sickness was so bad the week of his birthday, I ended up in the ER and had to get drugs. I felt like the worst mother in the world! I couldn't even pull myself together to make a cake for my sons first birthday.
He got the snow suit for his BDAY, he sure looks like he's having fun!

But then the I got the impression that maybe we shouldn't let Abinadi try butter yet! (You definitely have to listen when you get a message from the Still Small Voice!)
Well a week later I was hosting Joy School and the kids were decorating graham crackers with icing. I was excited because I made ornamental icing which is powder sugar, water, and mirengue powder! So Abinadi could have his first frosting! But low and behold he started "reacting" imediately! I couldn't figure out why, then I read the ingredients in mirengue powder...there's milk in there! I had no idea! I've been using it for years and never read the ingredients because I thought it was simple powder egg whites! I even learn something new everyday.
Then a couple weeks later I gave him a graham cracker and he started "reacting" again! I couldn't believe it! I know that all the ingredients in the crackers were safe, I checked the box at least 5 times. At least so I thought, so I started nit picking all the ingredients...wheat, good...sugar, good...cream of tartar, hmmm. Isn't that just a baking spice? So I checked our McCormick Cream of Tartar, and all it said was cream of Tartar, so I did research online and low and behold Cream of Tartar is actually a by product of grapes from the whine making process! (I bet you didn't know that!) And there were a few warnings out there that if your child has a grape allergy that they should stay away from it! I have been wondering for about 6 months if Abinadi had a grape allergy, I guess this kind of solidifies it in my mind!
So those of you who know me, know that I despise being pregnant! I am so sick and useless almost the entire 9 months that it is trully a trial for me! But I have realized that my being sick came as a great blessing! Crazy thought huh? But with how quickly and how much he reacted to such small amounts of milk and grapes, I am terrified that he would have ended up in the ER if I let him have a cake and icing made of butter and mirengue powder! Thank goodness for those Blessings in Disguise!




Thursday, December 3, 2009

Pay Attention! And Count! Hint Hint!

I know that it's been a while since I updated everyone...well, not that long, but a lot has passed by. Abinadi turned 1, we had Thanksgiving, and we are preparing for Christmas. I've been sick lately so I'll catch up more later, but people have wondered if our blog is broken, so I thought I'd add some pictures to prove that we are all still here!
I think the decorations came out well!


Can you hear the laughter?



one.two..three...Jump!
I'll try to get the rest of the pictures and stories up soon...er or later! ;)
We love and miss you all! Especially during this holiday season!