Today is a bit calmer for me. The last couple of days have been rough as I have tried to soak in Elianna's new diagnosis and what it means. One of the things we can always count on about science is that it will continually morph and change as we learn new things, or at least, think we do. Since this is a new syndrome I am so happy that we live in the perfect time where I can use this information to help her. I am also overwhelmed with what it means. While it is not a terminal diagnosis, I definitely feel the weight of how it could be if it is not monitored or taken care of properly. I feel as if I have a child that has been diagnosed with...say....diabetes.
Our doctor reassures me that most outgrow this condition so I am trying desperately to not be overly dramatic, but the reality is that even if she does outgrow it, there will be years of trial and error, record keeping, and modification. It exhausts me to think of it!
Thank you so much for your prayers and for those of you who have sent me a note of encouragement. It really has meant a lot to me.
In regards to her diagnosis, here is an explanation about allergies as I understood it explained to me:
There are two 'types' of allergies. One type begins with respiratory symptoms and ends in anaphylactic shock (like my lovely strawberry, shellfish, and watermelon allergies). The other type begins with gastrointestinal symptoms and ends in severe flu-like symptoms and complete intestinal failure. Science only recently discovered the gastrointestinal side of it, and that spectrum is called FPIES. There are blood tests to identify the anaphylactic spectrum, but not the FPIES spectrum, so it is diagnosed based on common traits and symptoms. Over 50% of infants with the dairy and soy protein problem that Elianna has end up with FPIES.
All of us have memory receptors in our blood that remember allergens. These receptors die out approximately every 18 months. When Elianna is old enough to begin testing her allergies to certain things, we will introduce a small amount and see if she reacts. If she does, we have to wait 18 months before reintroducing that food again. Oddly enough, tree nuts will be one of the first things she can have, and we can try transitioning her off of formula and onto almond milk or hemp milk (hemp milk??).
The nutritionist said that this process of introducing foods other than fruits (no bananas) will also be dependent on behavior. Elianna is developing a connection to solids making her hurt and wants only the bottle when she is hungry. In the meantime she could be on formula for her protein needs until she is two.
This is all the information I have so far. And, let me tell you, it is enough! The concept of working full time, homeschooling Moriah, running a home, and making/growing/buying food to accommodate our needs is extremely intimidating. I am exhausted just thinking about it! The one good thing I can see is that it will keep me on my knees!
Wednesday, June 23, 2010
Monday, June 21, 2010
Who Would Have Thought
Today I headed to the Pediatric GI specialist for Elianna's follow up appointment. Last week we received the good news that her blood tests came back negative for Celiac and for a whole gamut of allergies. I entered the office and jokingly told the doctor I was hoping I would show up and he would just tell me she had a rough first four months before her dairy protein diagnosis, and that all she needed was a good round of probiotics and would be good to go. He laughed. And then told me, 'yeah....no. We can fake throwing up but we cant fake diarrhea'. Darn.
We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.
Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.
The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.
The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).
What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).
I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!
I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.
We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.
Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.
The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.
The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).
What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).
I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!
I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.
Monday, May 24, 2010
Farmer Boy Dinner
Last night we finished reading aloud the third book in the Laura Ingalls Wilder series, Farmer Boy. There is a chapter where they enjoy a very traditional Christmas dinner, and the fried apples and onions stuck out to Moriah (bleck). We agreed that when we finished the book we would have a "Farmer Boy Dinner", and discussed what we thought fried apples and onions might taste like.
Personally, I would rather summer be here by now and I believe we have had enough cold weather and rain. BUT, tonight I was very thankful for the cool air as I tried to whip up a traditional mid-western meal and then swallow it down with a gallon of water. Here is what was on our menu:
ham (there was no way I was doing a whole pig on a platter, I don't care how Almanzo's family did it)
cranberry jelly
mashed potatoes
candied carrots
and....
fried apples and onions.
Summary: I have no new recipes to add to my stash. Half way through dinner Moriah complained of a tummy ache and switched her plate over to apple sauce, fresh farm carrots and half of a Tums. I enjoyed the remaining half of that Tums, and my prairie husband packed his lunch for tomorrow from the leftovers.
Go homeschooling!
Monday, May 17, 2010
Organizing for school
Today I took various ideas I had heard and created my own method to begin keeping track of Moriah's learning. I grabbed a binder and stuck dividers in it labeled with each subject area. I then put lined paper and sheet protectors in each section. A copy of the parent version of state standards went in the front pocket in case I ever want to look at them for reference, and voila! One organized binder ready to begin.
In my planner I began making a list of curriculum I wanted to use, books I was interested in checking into, and lesson ideas that I wanted to research.
Now I can begin to take assessment of where she is at and what she already knows! Here we go! :)
In my planner I began making a list of curriculum I wanted to use, books I was interested in checking into, and lesson ideas that I wanted to research.
Now I can begin to take assessment of where she is at and what she already knows! Here we go! :)
Tuesday, May 11, 2010
Choose a Support Scripture - task #1
I have come to discover that educational philosophies are cults. You would be hard pressed to find a philosophical view on education that did not wrap around a personal belief system or view of the world. As part of my professional development, and also in my endeavor to get prepared for schooling my own children, I spent this year researching and reading about the various currently popular and trendy educational philosophies. What I found was startling and amazing.
I then sat down and thought about my own experiences with students and the classroom. I examined my personal perspectives, and prayed about what the right educational goals should be for our family. I watched Moriah, and discussed ideas with other moms and other teachers. I reflected on the push for character education in the schools, and my days of teaching conflict resolution, social skills, and manners. What I finally concluded was simple: to raise our child in a God centered, God fearing home means an education embedded in our family values and a world perspective focused on God. What I discovered next was that it is not easy to find a popular educational philosophy to match.
Your response to that might be - duh! But I searched the Christian Homeschool world as well, and just like everything else, there are thousands of homeschooling 'denominations'; so, back to the brainstorming board I went. There I sat, once more, in my chair. Frustrated and overwhelmed I decided it was time to create a focus for our family. I firmly believe there is an answer for everything in the Bible, regardless of whether or not we want to see it. Shouldnt there be a manual in the Bible on homeschooling? No. There isnt. In fact, our society is much different today from when Christ walked the earth. For example, I cant seem to find a scripture anywhere on what age it is appropriate to have Moriah start piano lessons or learn how to type.
Several more weeks of prayer has led to what I think the first step in homeschooling should be: allow God to lead you to a scripture that captures your homeschooling mission.
Here is our scripture:
Deuteronomy 6:9 You shall write them on the doorposts of your house and on your gates.
Isn't that a great one? :)
I then sat down and thought about my own experiences with students and the classroom. I examined my personal perspectives, and prayed about what the right educational goals should be for our family. I watched Moriah, and discussed ideas with other moms and other teachers. I reflected on the push for character education in the schools, and my days of teaching conflict resolution, social skills, and manners. What I finally concluded was simple: to raise our child in a God centered, God fearing home means an education embedded in our family values and a world perspective focused on God. What I discovered next was that it is not easy to find a popular educational philosophy to match.
Your response to that might be - duh! But I searched the Christian Homeschool world as well, and just like everything else, there are thousands of homeschooling 'denominations'; so, back to the brainstorming board I went. There I sat, once more, in my chair. Frustrated and overwhelmed I decided it was time to create a focus for our family. I firmly believe there is an answer for everything in the Bible, regardless of whether or not we want to see it. Shouldnt there be a manual in the Bible on homeschooling? No. There isnt. In fact, our society is much different today from when Christ walked the earth. For example, I cant seem to find a scripture anywhere on what age it is appropriate to have Moriah start piano lessons or learn how to type.
Several more weeks of prayer has led to what I think the first step in homeschooling should be: allow God to lead you to a scripture that captures your homeschooling mission.
Here is our scripture:
Deuteronomy 6:9 You shall write them on the doorposts of your house and on your gates.
Isn't that a great one? :)
Friday, May 7, 2010
Napkin Savvy
While doing some research a few years back I got my mitts on a copy of Organic Housekeeping. This book was recommended by a friend, and was well worth the money. GREAT insight and ideas that should have been a no-brainer! One of the money saving tips was to use cloth rather than paper napkins, and this idea turned out to be easier than expected.
The reason I bring it up is because another friend said she saw it at my house and thought it was a great idea - that I just have a basket full of unironed cloth napkins for use. OOPS. Was I supposed to iron those? I don't think that was in the book.
What I did: purchased a stack of cheap solid color cloth napkins on clearance, fold them, and stick them in a bread basket. I wash and fold them with my kitchen towels.
Aside from saving money, I realized I had inadvertently taught manners when we took Moriah to a restaurant at about 3 years old and she put the napkin in her lap without direction! handy!
But don't worry, for special guests who come to our home we break out the saved paper napkins!
The reason I bring it up is because another friend said she saw it at my house and thought it was a great idea - that I just have a basket full of unironed cloth napkins for use. OOPS. Was I supposed to iron those? I don't think that was in the book.
What I did: purchased a stack of cheap solid color cloth napkins on clearance, fold them, and stick them in a bread basket. I wash and fold them with my kitchen towels.
Aside from saving money, I realized I had inadvertently taught manners when we took Moriah to a restaurant at about 3 years old and she put the napkin in her lap without direction! handy!
But don't worry, for special guests who come to our home we break out the saved paper napkins!
Wednesday, May 5, 2010
Another Here We Go
Homeschooling Mission #1 – where to begin? The task is so overwhelming! Bringing 10 years of teaching experience with me has proven to complicate things. Combine that with my personality (perfectionist, over analytical, etc) and you have a recipe for homeschool disaster.
But wait. There are a few things I can do with that. I could use it to free me up, dive into the various fun homeschooling ideas out there, and let Moriah's personality direct the way. Or I could take that as a sign that the perfect curriculum needs to be written. eek! Heaven forbid if I buy into that lie. *plugging ears, plugging ears* I have kept myself busy enough trying to learn the various major educational philosophies out there, and muddle through the convoluted secular public school world back to the world with a Christ-like perspective on schooling.
That brings me back to the first mission - where to begin. I will begin by assessing and evaluating Moriah - where is she at, what does she already know, and what are her current academic, social, spiritual, and development needs. Sounds intimidating. And fun!
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