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.

Thursday, March 18, 2010

WOW

Sometimes blessings come in disguise...sometimes, as a SMACK in the face!

If you've read my earlier posts you know that Abinadi cannot have regular meats, so we've been making the change, and buying a lot of turkey, and used up the last of our moose. We realized we needed to find another source of moose and started asking around at church, no one had much left so we figured we needed to figure something out. (If you remember from before we're on the list to help take care of moose when hit by cars and when you do so, you get to keep the meat. But it's hit or miss when they need you, and who's turn it is.)

Well monday after talking to everyone we get a call. There was a moose up in Eagle River and it was our wards turn to take care of it. WOW, we couldn't believe it! Heavenly Father knew we needed meat for Abinadi and he was providing for us. We were so greatful for the blessing...

...But the story get's better! With most of these situations the moose is hit by a car (I know, roadkill, I try not to think about it!) well we found out this one wasn't. Oddly enough the moose was climbing down a mountain like many moose do everyday, and it fell and broke two of it's legs. So it was lame up on the mountain for two days before it was found. WOW, and yet the story gets even better. A neighborhood dog went missing for those two days, and it was found with the moose pretecting it from birds and other wild animals. I know, crazy huh?! So we got this moose in the freshest form possible, and with the most amount of meat.

I heard the story and I couldn't believe it! Moose do not just fall down a mountain and brake their legs, and they difinitely do not have neighborhood dogs come and protect them for two days! Once again, when you have a need Heavenly Father will provide a way! Even with something as crazy as moose meat!

Monday, March 8, 2010

Ultrasound results

We finally had our ultrasound. Woohoo. Especially after all the drama and headache of getting it. It was also slightly depressing with the military how quick and impersonal it was. But YEAH, HOORAY, we got the news we were looking for. Drumroll please…it’s a boy! Uriah and I are excited, it is truthfully the news we were expecting. We both had a strong feeling it was a boy. Abinadi is still oblivious; mostly annoyed that he can’t lay comfortable on my tummy. I will not be surprised if he regresses when the new baby comes. :o)

Isabelle’s response is the funniest! The first time I told her, (we had prepared her that we were probably having a boy because all she could talk about was how she wanted a sister and we new she would be heartbroken if it was a boy) she was monotone and asked, “Oh, did the doctor tell you that?” Didn’t seem upset but not happy either.
Later Uriah asked her how she felt about having a baby brother, this was her response:
“I want a baby girl, but we’re having a baby boy.” Then, a couple minutes later, she said, “I’m still angry that we are having a baby boy. But just a little angry.”
Needless to say I was literally rolling on the floor laughing. Finally a little while later she said she wasn’t angry anymore.

My true response is that I want the house entirely rearranged for the kid. The kids rooms have to be switched (It only makes sense that the ones sharing should get the larger room, DUH!), and I want the family room moved around so it will be more functional, and to move the daybed which was being used as a couch upstairs for Abinadi (which means we have to move the couch into the family room and buy a new couch for the living room. We either had to buy a bed or a couch, and since we already had a bed, the couch makes more sense! Now we just need to find one we like in our price range.) Don’t you just love nesting?! Uriah comes home and asks, “What do you want me to move today?” Hee Hee. He’s learned quickly. It’s stressful and the house is a mess, but it gives a chance to spring clean and clear the rooms of allergens.

I've posted many posts today to catch family up on the big news around here, so please keep reading on.

The Name Game

So now that we all know that the baby is a boy, I can finally make Uriah discuss names with me, and he has told me that he doesn't know because he got the name he wanted. So a little background, Abinadi was named because it was Uriah's favorite scripture hero with a story that means a lot to him. He also wanted his son to not just have a scripture name, but a scripture name that could be an example for him, so after many prayers by me I finally realized that his name was supposed to be Abinadi, and when we first saw him we knew he would be strong enough to handle that name!

Now with another boy on the way, I have made Uriah promise me one thing, that this boy be named with the same criteria as Abinadi. A name that has a great story behind it, preferably a scripture or church history story, and a name that can be an example for him. Well Uriah has never been good at discussing names and I need help, so I am openning the subject up for discussion.

Please share with us your favorite scripture or church history heros. Not just a nice name, but a name that can be a good example. I would love any thoughts you might have, feel free to share them with me any way you want, comment, email, phone, facebook.

Daddy Blockhead

Sometimes Uriah can be such a BLOCKHEAD!….I guess it’s a good thing because he entertains the kids. Hee Hee!
I love you Honey!

Abinadi Allergy Results

We had Abinadi retested for allergies, but we have had so much difficulty introducing new foods and getting him off of the most basic of baby foods that we were trying to get a basic baseline and to then move forward from there. He had 50 prick tests and 25 patch. The pictur is from a week later and a bath later, his back was so small they had to do pricks all the way down his bottom. Good news is that he is not anaphylactic for any allergens, nor does he have any seasonal, environmental, or pet allergies. Yeah!!! His patch test was a different story.
Here’s is the breakdown of Abinadi’s Allergies:
Milk
Apples
Peas
Garlic (which can be found in many processed foods)
Beef
Chicken
Pork
Now Abinadi might have many more food allergies, this was just a baseline test to get us started. We will have to see what the future brings. He also has a contact allergy of Lanolin, fragrance, and CAPD, which are found everywhere in household products and mostly all soaps, and body care products. Which he will never grow out of, and buying hypoallergenic or fragrance-free does not guarantee that they are free of these allergens.

The BIG news is that Abinadi most likely has ASTHMA. It is a daunting diagnosis but we have already started him on medication and it has made a huge difference in his lifestyle! Even with his eating because he breaths better.

So what does this mean? We get to go exotic with meats, wild game and fish. And while he doesn’t have many household, environmental or seasonal allergies we need to get rid of them to help his asthma. The good news is that since we have been medicating his asthma, his ability to eat “grown up” food has improved. The doctor claims it is because when you eat you need to breath and when you can’t breath, you can’t eat. Who would have thought?

Also he does not appear to have a soy allergy, so hopefully by the end of the year we can have both children eating soy. The problem; garlic is an allergy like soy that is in everything so the likelihood of him being able to eat out, or many processed foods will still be slim.

Isabelle Allergy Results

We had Isabelle retested for her food allergies. It was a torturous experience! 50 skin prick tests and about 35 patch tests. Which for the week prior and during they are not allowed any medicine, not even Tylenol for the pain. The wonderful news is that she is growing out of some of her allergies. Yeah!!!! The picture is from 4 days after the test and a bath so imagine what it looked like before!

Now what does that mean you ask? Well it means that we get to take this next couple years to slowly reintroduce the foods that she was allergic to.

Does this mean she can start eating all the foods she couldn’t before? No, since she has been off of the food for so long, it may take a long while before her body can tolerate the food, so while she is no longer “allergic” it does not mean she can tolerate it yet. We are going to start with apples and then forms of Soy. Which for different reasons could take the entire year.
Here’s the breakdown of what she’s allergic to:
Melons
Green Bean
She is also still lactose intolerant, but the doctor thinks she is old enough to try lactaid before she has dairy products to be able to eat it on rare occasions.
She is also severely allergic to cats and mold.

The doctor wanted to put Isabelle on an everyday allergy medication, Singulair. It helped her immensely until she started having a “mood” reaction where she became severely depressed with many other behavioral problems so needless to say that option is out!

Well that's the catch up of our family. Hope you all are doing well! We love and miss you all!

Wednesday, March 3, 2010

Vrrrr! Vrrrrr!

We bought Abinadi his first couple sets of hotwheels cars. It is ADORABLE!!!!!!! Vrrrr! Vrrrr!

It's just as cute that Isabelle is baffled as to how he can have fun making the cars crash each other off the table. Hee Hee


Sorry I am so behind on updating this, we should have lots of news by the end of this weekend so keep watching!