How do you convince an 8 month old that this…
…is not so smart?! Especially when Big Sister makes it look Sooooo Fun!
I already caught him after he fell down three stairs and he decided to climb back up and play some more. Cute…but SCARY!!!
Raising Awareness and Undertanding of Eosinophilic Disorders by Showing How it Affects Our Family
About Us
- Kaelynn
- 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.
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.
Friday, July 31, 2009
Wednesday, July 29, 2009
Wisdom of the Young
We have had non stop drizzle for the past several days. With all the moisture we now have a backyard covered in poisonous but pretty mushrooms. Isabelle asked me where all the mushrooms were coming from, so I gave her a scientific answer that because it was raining so much there is a lot of moisture in the air which mushrooms like and that is why they were groing. She had to quickly correct me, "No Mommy, they come from underground!"
Not Much Going On
There isn’t much going on here, so I thought I’d give you little tidbits of the last week. First we had another hike. Uriah went with the youth. Isabelle begged and begged until we let her hike with her Dad. She stayed in the carrier all the way up and walked down most of the way. We are learning that the reason why there are so many short hikes in Alaska is because instead of making a longer safer trail with a lot of switch backs they just go strait up the mountain. Uriah did a lot of hand over hand scrambling with a toddler on his back. (Scary Huh? I found out after he came back down.) Abinadi and I took a different trail where he happily napped the whole way and I didn’t have to worry about falling off a mountain.
Thank Goodness for technology! The kids and I hung out in the truck watching a DVD while we were waiting for Uriah to finish up with the youth.
Abinadi is trying to grow up so fast. He can now climb up stairs and we are working on descending them now.
Second Try….Almost There.
We tried another round of crackers. They are more cracker like. But a little too much like Wheat Thins. (They are the only type of crackers we can still buy.) I want a recipe that is like Ritz. The good thing about this recipe is that there is a lot of room to play with for changing the flavor and texture. I got smart with this batch and instead of cookie cutting them I used another fondant tool and roller cut them before baking.
So that's the update. We hope you all are having a little more fun then us!
Thank Goodness for technology! The kids and I hung out in the truck watching a DVD while we were waiting for Uriah to finish up with the youth.
Abinadi is trying to grow up so fast. He can now climb up stairs and we are working on descending them now.
Second Try….Almost There.
We tried another round of crackers. They are more cracker like. But a little too much like Wheat Thins. (They are the only type of crackers we can still buy.) I want a recipe that is like Ritz. The good thing about this recipe is that there is a lot of room to play with for changing the flavor and texture. I got smart with this batch and instead of cookie cutting them I used another fondant tool and roller cut them before baking.
So that's the update. We hope you all are having a little more fun then us!
Tuesday, July 21, 2009
First Try……..Failed!
Ok, so I know this isn’t very blog worthy, but I figure I am writing this blog to keep in touch with everyone. And if you have known me long enough you know that I am terrible having conversations on the phone. I am just not a phone person and never have been. The only persons that I consistently have ever talked to on the phone is my Mom and Uriah.
Ok…so back on topic. This is what I what I would talk to you about if I actually did get around to calling everyone.
For those of you who are just now catching up with my family, you need to know a little history. Isabelle has several food allergies and Abinadi has decided he wants to be just like his sister and has just about all the same allergies. They are allergic to soy, apples/pears, milk, and quit a few other fruits and vegetables. For those of you who are like me and never looked at the ingredients on your food, you have no idea that SOY is in everything! It is an emulsifier and preservative. To put it in different terms, soy makes up 25% of all Americans’ calories! Now I am not talking about soy milk or pediasure. I am talking about your everyday store bought food, your fast food, and just about everything else. To make matters worse, if you find a food that is soy free, it usually has milk or apples/pears in it. So for the past couple of years we have been searching for food that my children can eat. We found a few brands at health food stores, but sad to say that since health food has become more popular and their products are more popular, these brands have sold out for profit and now put soy in all their products. (Soy is the cheapest of all vegetable oils)
Ok, sorry for that rant…back to the story again. Well about 5 months ago I had come to the realization that I could no longer find soy and milk free bread. So I had to start making all our breads from scratch. The cookies were the next to go, but that didn’t break my heart too much, cookies are easy. But now all the crackers we used to buy now have soy. Crackers aren’t so easy. I’ve been looking for recipes for a while now but hadn’t tried anything yet. Uriah had been TDY these last two weeks and I had hoped he would find some crackers in the lower 48. But sadly they all had soy too.
So I gave in today and tried making some butter crackers. I don’t think I got the recipe quit right. I might change how I cooked them. But I think I need a different recipe. They kind of came out like sugarless sugar cookies. Not my cup of tea. Isabelle liked them, but then again she likes anything new because her choices are so limited.
I am still debating if I want to try a new recipe or keep working on the one I have. It has taken me several tries to get the tortilla recipe finally right. So maybe it just needs some perfecting. I do have to say though that Wilton’s fondant rolling pins and mat are awesome for rolling dough. (Especially if you don’t have that much counter space) I use them for everything.
So that’s my boring story that I wanted to share. I know it’s long. I really just wanted to share the fact that making crackers…not so easy. But the story doesn’t make too much sense without all the history. So thanks for reading my rambling. It wouldn’t have taken so long to tell if I had told the story over the phone, but then again, that’s a lot of phone calls.
If any of you have any good cracker recipes or tips, I am open to suggestions! Please help if you can. If not, you are all going to get an update of every trial and failure in this cracker baking adventure. So if you don’t want any more boring long winded stories, please help!
We love and miss you all!
Ok…so back on topic. This is what I what I would talk to you about if I actually did get around to calling everyone.
For those of you who are just now catching up with my family, you need to know a little history. Isabelle has several food allergies and Abinadi has decided he wants to be just like his sister and has just about all the same allergies. They are allergic to soy, apples/pears, milk, and quit a few other fruits and vegetables. For those of you who are like me and never looked at the ingredients on your food, you have no idea that SOY is in everything! It is an emulsifier and preservative. To put it in different terms, soy makes up 25% of all Americans’ calories! Now I am not talking about soy milk or pediasure. I am talking about your everyday store bought food, your fast food, and just about everything else. To make matters worse, if you find a food that is soy free, it usually has milk or apples/pears in it. So for the past couple of years we have been searching for food that my children can eat. We found a few brands at health food stores, but sad to say that since health food has become more popular and their products are more popular, these brands have sold out for profit and now put soy in all their products. (Soy is the cheapest of all vegetable oils)
Ok, sorry for that rant…back to the story again. Well about 5 months ago I had come to the realization that I could no longer find soy and milk free bread. So I had to start making all our breads from scratch. The cookies were the next to go, but that didn’t break my heart too much, cookies are easy. But now all the crackers we used to buy now have soy. Crackers aren’t so easy. I’ve been looking for recipes for a while now but hadn’t tried anything yet. Uriah had been TDY these last two weeks and I had hoped he would find some crackers in the lower 48. But sadly they all had soy too.
So I gave in today and tried making some butter crackers. I don’t think I got the recipe quit right. I might change how I cooked them. But I think I need a different recipe. They kind of came out like sugarless sugar cookies. Not my cup of tea. Isabelle liked them, but then again she likes anything new because her choices are so limited.
I am still debating if I want to try a new recipe or keep working on the one I have. It has taken me several tries to get the tortilla recipe finally right. So maybe it just needs some perfecting. I do have to say though that Wilton’s fondant rolling pins and mat are awesome for rolling dough. (Especially if you don’t have that much counter space) I use them for everything.
So that’s my boring story that I wanted to share. I know it’s long. I really just wanted to share the fact that making crackers…not so easy. But the story doesn’t make too much sense without all the history. So thanks for reading my rambling. It wouldn’t have taken so long to tell if I had told the story over the phone, but then again, that’s a lot of phone calls.
If any of you have any good cracker recipes or tips, I am open to suggestions! Please help if you can. If not, you are all going to get an update of every trial and failure in this cracker baking adventure. So if you don’t want any more boring long winded stories, please help!
We love and miss you all!
Friday, July 17, 2009
Izzy’s Photography
Sometimes I find that you just need something to occupy the mind of a 3 year old in order to keep your sanity. Today that sanity came in the form of an old camera that she got to take around and be a photographer for the day. Thanks to Special Agent Oso she knew how to work a camera. (All you parents out there probably know who I am talking about) She literally took 156 photos. Thank goodness the world has gone digital and it didn’t require me to waste time and money on getting the photos developed. And now thanks to the wonders of the internet you all get to enjoy her photography that she is so proud of. Don’t worry I am not going to post all 156 photos. But you do get a highlight. Here is the world from the viewpoint of a 3 year old:
Wednesday, July 15, 2009
Handy Hubby
So with trying to figure out how to be a good mother while trying to keep the house clean, I’ve noticed that normally one or the other starts to go downhill. I decided that I needed a calendar to keep track of what I need to get done but paper ones don’t work because I am constantly changing things around depending on appointments and other events so it ends up a blob of scribbles. The computer never works because it takes too much effort to check it when I need to remember things. So my wonderful Hubby offered to make me a calendar and this is the almost finished project. It’s a magnetic board so that I can easily change my schedule. It’s going to have monthly, events, chores, activities and any other type of magnet you can imagine. I am using scrap booking stickers and little wood pieces. I just realized that the cost of them add up so we will be collecting them slowly whenever we can find them on sale, or when Uriah can scroll saw some. It’s awesome though isn’t it! Uriah never ceases to amaze me! I’ll have to add a picture when we have all the magnets. Feel free to send me any extra scrap booking stickers you don’t want… Hee Hee! Just kidding! (Sorry for the glare)
4th of July Celebrations! (Or lack there of)
When you think of the 4th of July you envision back yard BBQs, picnics and parades, and FIREWORKS. Well here in Alaska everyone seems to see a different picture. The majority of people here spend the day fishing or gardening. Exciting huh? There are only a couple of places that do fireworks, and that’s at midnight, and the main one is done at a baseball park after a game. Not really family friendly. You can’t really blame them for the midnight fireworks because that is the only time that it even gets a little dark. But it isn’t nice when you have children sleeping. So Uriah and I decided to go hiking again. We finally gave in and bought two children carriers so that we can hike more easily, and because we can’t find any other hikes that are stroller friendly. This way we can also plan more hiking trips too! We had a wonderful time hiking! Sadly we didn’t get to the top of the mountain. Partly due to the lack of trail, (we were on a back county trail) but mostly due to children being tired. Isabelle hiked at least a mile and half up the mountain. She was having so much fun walking and talking about all the plants and things she was seeing! I was so proud of her, also grateful that I didn’t have to carry her all the way up. J I wasn’t surprised that when we decided to turn around she was ready to be carried all the way down. She just sat in the carrier and talked to herself about all her new plans for hiking. Abinadi loves the carrier. He was so cute especially when he fell asleep on the way back down. We then went home and spent the rest of our fourth resting the evening away. Happy Fourth of July!
Quality Family time!
Whenever Uriah has some free time, he has been spending it in the garage working and woodworking and other craft projects he is doing for me. Isabelle loves spending that time in the garage with him having quality Daddy daughter time. They are both content to sit there with each other doing their own crafts. Well one day they were out in the garage and I was inside on the computer with Abinadi and he just started freaking out. He was not happy. So finally after trying everything and not being able to make him happy, I passed him off to his father in the garage. Not too surprisingly the tears stopped instantly! He was happy as a clam from then on!
A Hiking We Will Go! And some back yard camping too.
Well it was a fun filled weekend for the Orland Family! It started with a backyard camping trip Friday night, followed by ward picnic on Saturday, finished up by a family hike and lake visit on Monday. Uriah and Izzy slept the whole night outside. I of course was smart and slept inside in the nice cozy comfortable bed. I still was the one waking up with Abinadi to feed him in the middle of the night. I guess you can decide which one is better. Isabelle had a little trouble with the early light in the morning waking her up, but other than that it was a success. Watch the smilebox to your right to see more photos. Saturday we had a ward picnic and I wouldn’t normally mention it except for the fact that we saw a MOOSE. Now seeing a moose isn’t that rare of an event. But this one was cool because it was only a football field distance away. And my husband being who he is took Izzy over to look at it. I thought we were going only a little closer since you hear horror stories about how mean Moose are. Uriah and Izzy kept going closer and closer, (I didn’t want to yell at them because I was afraid it would scare the moose) then I realized that there was a barbed wire fence between us so I went closer with Abinadi. When we got to about 20 feet away I realized that there was no barbed wire on the barbed wire fence. I was a little freaked out! Ok a lot freaked out until Uriah told me all the warning signs to look for if the moose was getting angry. Then anger over took fear when I realized I hadn’t brought a camera! Oh well, lesson learned. Then on Monday Uriah took the day off and we had the whole day together as a family. We went on our first family hike up to Thunderbird falls. We all had a lot of fun, and was quit surprised at how tropical Alaska could look. We especially loved the plants with leaves larger than Izzy’s head. It was only a little disappointing because of how far away from the actual falls we were. Happily Izzy had no clue and thank goodness for the zoom on the camera we got a decent picture. We then went to the largest Lake around here (the one Uriah Canoed across) and collected some pretty rocks. Beware Papa Allan, they might be sent to you to make some jewelry. All in all it was a fun and exhausting day. We are now looking forward to this coming Fourth of July weekend for some more special family time. We’ll let you know if we do anything worthwhile.
Make a Smilebox scrapbook |
"I so proud of you," says big sister Izzy.
So in the middle of writing my next blog about our last weekend I realized that Abinadi was standing up behind me holding onto the chair. He still can't crawl correctly yet he is now climbing up to a standing position on his own! I obviously had to stop everything and get the camera out to take pictures. Luckily I got him to repeat what he had just done. This is the rare footage of a child actually repeating what you want them to on camera. The clip is a little long but definitely worth the wait. Especially to see Isabelle’s response. It makes up for all the time outs she has been getting lately for hitting Abinadi.
Make a Smilebox postcard |
Welcome to Our New Chapter!
We did it! We are finally blogging. Is that the right term? Anyways…having just moved here to Alaska we are trying to find the best ways to keep in touch. So I will do my best to keep the blog updated with something new about the family. Even if all it is is a new Smile Box or photo in the corner. So let’s try to catch everyone up on us. Uriah is doing great at his job. We are having to adjust to him being gone more often and for much longer hours. He is also in the Young Men’s Presidency which takes up a lot of his time as well. He just recently went on a canoeing trip as a precursor to the week long trip they are planning in July. I complain too often about him being gone so much but I truly am proud of him! Ok...and a little jealous. Being a Recreation Major, I would love to be the one who got to go on camping and canoe trips. With all the talk about Uriah and Camping, Isabelle has caught the camping bug. We make tents for her weekly in the house and we are getting brave and are planning to try a backyard camping trip to see if it is possible to survive an actual in the forest camping trip this summer. I think I am most worried about the mosquitoes (or as Isabelle calls them, Bugsquitoes). They are everywhere! Everyone talks about how scary and big they are. They start out big and easy to kill, then they get smaller and faster and meaner. I wish we had the big ones back!
Isabelle is slowly adjusting to being so far from family. It is hard not having the ready made friends she had in Colorado. She has a new imaginary friend everyday. She is so creative and smart! I think Uriah and I will end up trying to put her in an early start program before kindergarten, we can barely keep up with how smart she is becoming!
Abinadi is growing like a weed. Sadly he is allergic to just about all the same foods that Isabelle is. At least we are now prepared and ready to keep such a difficult diet for him. He is into everything and such a boy! Everything is fare game for going in his mouth or being destroyed. He is getting his first two teeth and just started army crawling. I love this time when you can see how much they learn everyday. Not much going on with me. We are still in the decision stage of whether or not I’ll try to finish my degree here, or get a job. Just keeping busy being a Mom. Maybe I’ll finally finish all the crafts and quilts I have started that are still laying around unfinished, or finally getting around to accomplishing some of my goals. We love it here in Alaska! I have already told Uriah that I think we could retire here. He just keeps telling me that first I should survive a winter, and second it is far too early in his career to retire. So well see. But it is gorgeous here, and everyone is so nice! They haven’t seemed to have progressed past the 90’s though. It is quite interesting. Well I hope that gives you a little update of us! There will probably be a lot of little posts to start to get everyone caught up with what is going on in our lives. We love and miss you all!
Isabelle is slowly adjusting to being so far from family. It is hard not having the ready made friends she had in Colorado. She has a new imaginary friend everyday. She is so creative and smart! I think Uriah and I will end up trying to put her in an early start program before kindergarten, we can barely keep up with how smart she is becoming!
Abinadi is growing like a weed. Sadly he is allergic to just about all the same foods that Isabelle is. At least we are now prepared and ready to keep such a difficult diet for him. He is into everything and such a boy! Everything is fare game for going in his mouth or being destroyed. He is getting his first two teeth and just started army crawling. I love this time when you can see how much they learn everyday. Not much going on with me. We are still in the decision stage of whether or not I’ll try to finish my degree here, or get a job. Just keeping busy being a Mom. Maybe I’ll finally finish all the crafts and quilts I have started that are still laying around unfinished, or finally getting around to accomplishing some of my goals. We love it here in Alaska! I have already told Uriah that I think we could retire here. He just keeps telling me that first I should survive a winter, and second it is far too early in his career to retire. So well see. But it is gorgeous here, and everyone is so nice! They haven’t seemed to have progressed past the 90’s though. It is quite interesting. Well I hope that gives you a little update of us! There will probably be a lot of little posts to start to get everyone caught up with what is going on in our lives. We love and miss you all!
Make a Smilebox photobook |
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