Ever since we discovered Elianna's reaction to corn with the patch testing I have been in a frustrated, helpless, sad, not-sure-what-to-do funk. It has been very difficult to shake. Funny how the Almighty takes care of things like this.
Recently some friends of ours had their twins extremely premature. In fact, she had the babies a week or so ago, and the babies are not due until January or February. Last night I learned that one of the extremely premature babies has gone to be with Jesus, and the other is barely hanging on with several brain bleeds.
This morning one of MFFs called and in conversation we discussed a friend she has with stage four breast cancer, and her three small children. Her chances are grim and she will most likely be leaving her babies behind.
I looked at my Ellie this morning and realized that both of these families would say: You still have her.
In spite of the stress, the unknowns, and the extreme lifestyle changes, Elianna appears to be happy, healthy, and growing like an average toddler. The Lord is protecting her future. Our home will be healthier in the end and we will be forced to rethink things to the 'nth' degree. She still suffers, she is still in pain often, and we have no idea to what extent she will be affected for life. But in the end our major stresses boil down to time and money - not enough. And the Lord promises to take care of us if we just let him. We still have her, and I wouldn't trade a minute of it. Good bye funk!
Wednesday, October 13, 2010
Sunday, October 10, 2010
Pioneer not Hippie, Please.
As we have gotten farther and farther into the realm of family life with FPIES, I find myself exhausted with canning, puree-ing, dehydrating, researching, etc. I now have books about preserving foods, homesteading, and natural living. My latest adventure of looking to make my own olive oil soap has pushed me into the realm of embarrassment. Saving money, being healthier, and perhaps even looking 'green' have all been perks of our recent family adjustments. But making my own soap is a little too 'hippie' if you ask me!
Have you ever tried to eliminate soy, dairy, corn, processed grains, and sugar? It's relatively difficult. In fact, there are days that I just want to say 'screw it all!' and feed my family Oscar Meyer drowning in a coat of Heinz and resting in a Rainbow Bread bun. Agh! The more I learn, the more I wish I didn't know, and the more I have to explain to other people when they look at me with that 'oh you are one of THOSE' looks.
After expressing my frustration and insecurity to several friends, I think I have finally come to terms with the fact that I am making these choices out of necessity. I have a little girl in my house who can not have corn, dairy, soy, or grain products touch her skin. She can not accidentally ingest the soy based ink on the newspaper, or the corn base in the bath soap. It is my job to take care of her, and I will not be embarrassed.
I am a homeschooling, researching, canning, dehydrating, cooking, baking, blending, soon to be soap-making, chemical free mother. We avoid hydrogenated oils, soy products, refined sugars, dyes, preservatives, and processed foods. We limit our plastic, buy natural meats, and have organic fruit and vegetables delivered by a CSA.
I am not a hippie. I am a Pioneer. In many ways.
Have you ever tried to eliminate soy, dairy, corn, processed grains, and sugar? It's relatively difficult. In fact, there are days that I just want to say 'screw it all!' and feed my family Oscar Meyer drowning in a coat of Heinz and resting in a Rainbow Bread bun. Agh! The more I learn, the more I wish I didn't know, and the more I have to explain to other people when they look at me with that 'oh you are one of THOSE' looks.
After expressing my frustration and insecurity to several friends, I think I have finally come to terms with the fact that I am making these choices out of necessity. I have a little girl in my house who can not have corn, dairy, soy, or grain products touch her skin. She can not accidentally ingest the soy based ink on the newspaper, or the corn base in the bath soap. It is my job to take care of her, and I will not be embarrassed.
I am a homeschooling, researching, canning, dehydrating, cooking, baking, blending, soon to be soap-making, chemical free mother. We avoid hydrogenated oils, soy products, refined sugars, dyes, preservatives, and processed foods. We limit our plastic, buy natural meats, and have organic fruit and vegetables delivered by a CSA.
I am not a hippie. I am a Pioneer. In many ways.
Tuesday, September 21, 2010
Friday, September 17, 2010
FAQ about Ellie
1. Q. Does she just have food allergies?
A. Yes, she has food allergies. But not 'just' food allergies. Common allergies as we know them affect the respiratory system. FPIES affects the gastrointestinal system.
2. Q. What can she eat?
A. At this time she is on a liquid diet (prescription medical grade amino acid based formula). She has two safe foods - peaches and nectarines.
3. Q. What can she not eat?
A. Anything other than her prescription formula and plain peaches or nectarines.
4. Q. Will she 'outgrow' it?
A. Technically no, since FPIES is a Tcell response. Cells in her blood respond incorrectly to foods and those cells take an average of 18 months to die off. After those 18 months, when she is exposed to that food again, her body may choose not to react and that food would have become suddenly safe.
A. Yes, she has food allergies. But not 'just' food allergies. Common allergies as we know them affect the respiratory system. FPIES affects the gastrointestinal system.
2. Q. What can she eat?
A. At this time she is on a liquid diet (prescription medical grade amino acid based formula). She has two safe foods - peaches and nectarines.
3. Q. What can she not eat?
A. Anything other than her prescription formula and plain peaches or nectarines.
4. Q. Will she 'outgrow' it?
A. Technically no, since FPIES is a Tcell response. Cells in her blood respond incorrectly to foods and those cells take an average of 18 months to die off. After those 18 months, when she is exposed to that food again, her body may choose not to react and that food would have become suddenly safe.
What is Food Protein Induced Enterocolitis Syndrome (FPIES)?
FPIES is a non-IgE-mediated gastrointestinal food hypersensitivity disorder. Food protein-activated intestinal lymphocytes elaborate inflammatory cytokines that result in increased intestinal permeability, malabsorption, dysmotility, emesis, diarrhea, pain, and failure to thrive.
In other words, FPIES is the intestinal version of anaphylactic shock. Eating food, particularly those high in protein, cause mild to severe reactions. Symptoms include some or all of these: malabsorption, colitis, shock, extreme lethargy, ulcerated colon, projectile vomiting/severe reflux, extreme diarrhea, failure to thrive, nutritional deficiencies, colic type symptoms, bloody stool, mucousy stool, rash, and stomach pains.
In other words, FPIES is the intestinal version of anaphylactic shock. Eating food, particularly those high in protein, cause mild to severe reactions. Symptoms include some or all of these: malabsorption, colitis, shock, extreme lethargy, ulcerated colon, projectile vomiting/severe reflux, extreme diarrhea, failure to thrive, nutritional deficiencies, colic type symptoms, bloody stool, mucousy stool, rash, and stomach pains.
Thursday, September 16, 2010
Only a Flesh Wound (or Not Who I Think I Am)
Today I thought to myself "I am so beat up." And then I laughed. My body hurts from lack of good exercise and carrying Elianna around on my hip. I have a 13 month old who still wakes multiple times at night to eat due to necessity. I think I tore something in my shoulder from reaching around to her in the car. Yesterday I impaled the palm of my hand when catching one of the baby rabbits I brought home for Moriah as a pet. And this morning as I was waking in bed Elianna gave me a head bunt accompanied with a large, fat lip.
Today I thought about how I felt beat up physically and then laughed because I feel beat up emotionally, too. The last several weeks have been full of my saying the phrase "I just cant do this" and then thinking "that whole line about He won't give you more than you can handle is crap; I am done." Then God spoke to me through a MFF blog. She was talking about how she was tired of the refining process and trying to be who she was designed to be. And God spoke to me. He said - 'Thats YOU. Let go of who you think you are, and allow me to shape you into who I know you can be.' It was a sobering moment. And I needed the day to process it. Along with a nap and another email from a MFF who encouraged me to visualize leaning on the Lord. I realized that I am limiting myself. That regardless of the events that the day holds, He is there, He is blessing me, and He is providing.
And then I thought about who I am, and I laughed. I often compare myself these days to the Isrealites and their journey in the desert. I find it amusing how often we want to head back to captivity when things get rough. Today I thought about how we often fight God's will for no reason, and end up missing body parts in the process (figuratively of course). Perhaps this was not divine, but I instantly had the thought 'Oh my gosh. I am the black knight!' For those of you who are unfamiliar:
God is so good. And I am so human. Sometimes I have to laugh.
Today I thought about how I felt beat up physically and then laughed because I feel beat up emotionally, too. The last several weeks have been full of my saying the phrase "I just cant do this" and then thinking "that whole line about He won't give you more than you can handle is crap; I am done." Then God spoke to me through a MFF blog. She was talking about how she was tired of the refining process and trying to be who she was designed to be. And God spoke to me. He said - 'Thats YOU. Let go of who you think you are, and allow me to shape you into who I know you can be.' It was a sobering moment. And I needed the day to process it. Along with a nap and another email from a MFF who encouraged me to visualize leaning on the Lord. I realized that I am limiting myself. That regardless of the events that the day holds, He is there, He is blessing me, and He is providing.
And then I thought about who I am, and I laughed. I often compare myself these days to the Isrealites and their journey in the desert. I find it amusing how often we want to head back to captivity when things get rough. Today I thought about how we often fight God's will for no reason, and end up missing body parts in the process (figuratively of course). Perhaps this was not divine, but I instantly had the thought 'Oh my gosh. I am the black knight!' For those of you who are unfamiliar:
God is so good. And I am so human. Sometimes I have to laugh.
Tuesday, September 14, 2010
Chickens Are Not Vegetarians: info for the FPIES and NON
The egg section of the supermarket makes me laugh. The variety of egg labels is insane. Organic, free range, cage free...the one that makes me laugh the most is 'vegetarian fed'. Could someone explain this one to me? First of all, chickens are not vegetarians. Sure, they eat vegetables and grains. But they also eat BUGS. In fact, left to their own devices, chickens will sometimes eat each other. Now if you are concerned about the poor bugs that are being eaten, then why are you eating eggs (which is meat by the way)? Perhaps you are concerned about omega 3 or omega 6 or omega 'whatever', and the vegetarian eggs are higher in this. These eggs break several of my personal rules on grocery buying. First, it is trendy. Second, we should be eating things how they were designed. And third, do you really know what that omega diet is?
Aside from bleaching white eggs and salmonella, the one thing that concerns me for my home is that the majority of commercial chickens are fed a diet of solely or almost all soy. The research I have seen shows that this passes on to the eggs, which really makes sense if you stop and think about it. So...
For the FPIES ~ when I get to the point that I can trial eggs for Ellie, how will I know if it is an egg fail or a soy fail if the eggs come from soy fed chickens? My mommy brain tells me that I wont!
For the non-FPIES ~ trust me when I say you have enough soy in your diet already. That is an entirely different research topic.
At the moment we do not have the ability or resources to have our own chickens, and Jason runs screaming from the room every time I mention it. The solution for my house is to find a local farm to purchase eggs from (thanks for the help finding a farm MFF!).
Here is a GREAT article on how commercial eggs are processed - quick and easy to read. If you are unable to open the link because you are not a member of Dr. Mercola's site, let me know and I will email it to you!
Are Organic Eggs Safer?
Aside from bleaching white eggs and salmonella, the one thing that concerns me for my home is that the majority of commercial chickens are fed a diet of solely or almost all soy. The research I have seen shows that this passes on to the eggs, which really makes sense if you stop and think about it. So...
For the FPIES ~ when I get to the point that I can trial eggs for Ellie, how will I know if it is an egg fail or a soy fail if the eggs come from soy fed chickens? My mommy brain tells me that I wont!
For the non-FPIES ~ trust me when I say you have enough soy in your diet already. That is an entirely different research topic.
At the moment we do not have the ability or resources to have our own chickens, and Jason runs screaming from the room every time I mention it. The solution for my house is to find a local farm to purchase eggs from (thanks for the help finding a farm MFF!).
Here is a GREAT article on how commercial eggs are processed - quick and easy to read. If you are unable to open the link because you are not a member of Dr. Mercola's site, let me know and I will email it to you!
Are Organic Eggs Safer?
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