I made a new friend! OK. Not really. I have not actually met her as she lives in Pennsylvania. But a friend who is storing jewels in her crown, and is truly a friend indeed! Hold tight for a great story :)
I love how my friends (you all) are so savvy at finding things on the internet. We all have different motivations and use different sites, which makes it all the more valuable when we share with each other. Last week I was feeling rather desperate about Elianna's possible diagnosis. To sit and wait for the allergist to get around to checking back with me was not what I considered a good option, regardless of what he said. While complaining, one of MFF (my favorite friends - do you like it? I made it up. It seems much more adult and appropriate than a cheesy BFF)...anyways, one of MFF sent me links to FPIES pages in facebook and baby center. Those are two places I would have NEVER thought to look for information.
I signed up for baby center and began perusing. I found an amazing amount of information within minutes. Moms helping moms out in a fantastic, long distance manner. I then found the facebook page. This is where I met my new friend.
Her name is Nichole. Isn't that funny? No, I am serious. Her name is Nichole. With an 'H'! And she has a set of twins who are have been battling GI complications since birth. She responded to a few of my posts with more information and encouragement than I have found in months. Then she sent me a facebook message, and in that message she offered to mail me 7 cans of the more expensive formula that they were not using. I was floored. And then I was skeptical. Who does that?
After Elianna's last doctors appointment I began reviewing the last 8 months and all of her symptoms. It occurred to me that she has never had a normal stool, and that even after switching to the partially hydrolyzed formula at three months, the blood went away but the diarrhea and other symptoms never have. That got me to thinking that perhaps she would benefit from the next step up - the more expensive amino acid based formula. Considering the financial state we have been in lately with insurance not covering everything from her formula to Moriah's speech, the thought of moving up to about $60 a can for formula made me want to vomit.
And then, here was this person I have never met offering to ship me 7 cans. I messaged her back and said that it was a lot to ask and I didn't know the cost of shipping it. Her response included this: 'It is hard but faith sustains me - one day at a time. I know it is scary to take the leap when you don't know where the money will come from. I began praying for your family last night and I will keep you in my prayers. I am in PA, but don't worry about the cost to ship the formula. This has been laid on my heart and my husband agrees. We have been so blessed with all of our financial needs being met.'
I cried. I emailed her my address, and waited. Would it really come? Was God really so obviously and blatantly providing during our financially tightest month yet?
Today the doorbell rang and I opened it to find a USPS box on my porch. The return label said Pennsylvania. I brought it inside in amazement. Cracking open the box I found a short note left on the top of 7 cans of very expensive amino acid based formula. It read:
Nichole:
Jehova Jireh
:)
Nichole
Jehova Jireh. God will provide. He will see that my every need is met.
I wept.
Thursday, August 5, 2010
Monday, July 26, 2010
Day One
Today we started our first official day of homeschooling, in hopes of making the transition a little easier and less pressured. I spent the last two weeks creating a detailed family schedule for us so that I would know I had time to do chores, home school, work, etc., and then spent the weekend planning our first week. Perhaps I should have created a schedule at the beginning of summer rather than at the end, and I would have gotten more done! This morning went great. I did learn one very valuable lesson. Well, make that two. The first is to not provide creative project options. I let Moriah choose which craft project she would work on today, and she thought they both looked so fun that she could not wait until tomorrow to do one of them. This resulted in a massive tantrum. Lesson learned for mommy. No choices. Instead, this is what we are doing. Lesson two was that on a schedule Moriah eats her meals much easier, without complaint, and swallows more. Hmm. Who knows why. Overall it was a great first day!
Tuesday, July 20, 2010
The new Disney
We travelled down to Anaheim this last weekend for our first family experience with Disneyland, and what a ride it was! The new Disneyland is definitely geared toward the older, more mature child, or those that have been exposed early on to terror. Fortunately we still had plenty of fun filled activities to fill our day. We visited the Princess Faire, watched a princess coronation, visited Pixie Hollow and Minnie Mouse's house, did a little bit of shopping and napping, and rode a few rides. Here are some tips that were given to us or that we learned when we went:
The parking lot:
The parking lot was not hard to get in and out of if you arrived early. There is a tram to the Resort from the parking lot that will allow for strollers not folded, but children may not ride in them. For sleeping children at the end of the day, the walk to the parking lot was about 10 minutes.
Food:
Outside of the park there is a picnic area if you choose to bring a cooler, but going to and from the parking lot would take a lot of time. There are lockers at the gate to place smaller coolers and items in that would be a good option. We did not use them. We packed our snacks and lunch items for the day in ziplock bags so that they were visible for security inspection, and filled the stroller basket. We brought a water bottle for each person, and filled them at various water fountains throughout the park. There were water fountains near every bathroom we used. We ate an early dinner and refilled our ice while there. We were pleasantly surprised to find a kid friendly and reasonably priced Mexican restaurant where we ate dinner for about $35. There were also healthier options around the park that were not outragesously priced, like fresh fruits and frozen 100% apple juice drinks that felt like a treat to Moriah. Check out Toontown for these.
Rides:
The amount of nightmare causing rides for small children = many. We had a most devestating experience on Frog and Toad's Wild Adventure, which caused extreme caution for the rest of the day. Avoid most rides in Fantasyland. And I was sad to find that most rides had a very scarey element. The Tiki Room, for example, now has an adult-like outdoor area to wait, complete with a juice 'bar' and booming, loud Tiki God's that take turns coming to life and shooting fire. This was not helpful for convincing a four year old that the upcoming closed room only included animated birds and flowers. Even Tarzan's treehouse, which used to be the Swiss Family Robinson House, had a frightening, growling tiger that sent Moriah running.
Moriah was smarter than us and figured out that the outside rides were the most pleasant, while those that disappeared into the dark were most frightening. Rides that were great fun for her were: King Arthur's Carousel, Dumbo, Mad Hatter Tea Cups, Its A Small World, Autopia, and believe it or not, Splash Mountain. Hit all rides geared for just smalll children early in the day because they close in late afternoon to prepare for the fireworks. We were sad to miss out on the Pirate Cove Adventure and the Petting Zoo. What made the day the most successful was focusing on meeting the characters which was so age appropriate and what Moriah truly loved. If you forget your autograph supplies like I did, they have official pens and autograph books you can purchase for less than $10 in Main Street as you come in (whew!).
If you have not heard of the amazing software called Ride Max, check it out! A few engineers in Southern California got together and studied the ride wait times and put together a program where you can plug in a bunch of different factors and it willg enerate a daily schedule for you that uses fastpass and the least amount of wait times. That being said, it was a great source of information to us, but since we did not know which rides would be a hit and which would not, we had to do a lot of plan changes.
We also were able to take advantage of the Stroller Pass. This little known trick was great! Arriving at Autopia we discovered that Elianna was too small to ride, so we asked the cast member at the entrance and she provided us with a Stroller Pass. Jason and Moriah entered the ride (using a fast pass), while Elianna and I climbed up the exit and waited for their return. When they exited the ride I handed Elianna off to him, and Moriah and I walked back up the exit to the cast member. I handed her the Stroller Pass and she put us right back on the ride! Hooray for Disney, this was a family friendly option.
I was suprised to find that the newere Disney pin trading trend was a big hit with Moriah. She had a blast finding cast members to trade pins with and begin a collection of her own. It was not money I had planned on spending, but was glad that we did. If you choose to participate, plan on spending $25 on a lanyard starter set with about 4 pins. If you head to Frontierland you will find the Trading Post that is a pin shop and probably the cheapest place to get started. For every $30 that you spend you can purchase a collectible pin for $1, and I purchased Moriah a 10 year pin trading anniversary pin (and then put it away so she would not trade it). If you find cards that have two pins on them this seems to be the cheapest way to get started. For a total of about $60 Moriah had more than enough pins to keep and trade for the afternoon.
I think that is more than enough info. I will post some pics when we get them downloaded. Overall it was a most fun adventure that Moriah loved, and she has been talking about non-stop. Despite what everyone said, one day in just Disneyland was more than enough, and should hold us over for the next 4 or 5 years until we feel ready to visit again.
TTFN...ta ta for now! (Tigger)
The parking lot:
The parking lot was not hard to get in and out of if you arrived early. There is a tram to the Resort from the parking lot that will allow for strollers not folded, but children may not ride in them. For sleeping children at the end of the day, the walk to the parking lot was about 10 minutes.
Food:
Outside of the park there is a picnic area if you choose to bring a cooler, but going to and from the parking lot would take a lot of time. There are lockers at the gate to place smaller coolers and items in that would be a good option. We did not use them. We packed our snacks and lunch items for the day in ziplock bags so that they were visible for security inspection, and filled the stroller basket. We brought a water bottle for each person, and filled them at various water fountains throughout the park. There were water fountains near every bathroom we used. We ate an early dinner and refilled our ice while there. We were pleasantly surprised to find a kid friendly and reasonably priced Mexican restaurant where we ate dinner for about $35. There were also healthier options around the park that were not outragesously priced, like fresh fruits and frozen 100% apple juice drinks that felt like a treat to Moriah. Check out Toontown for these.
Rides:
The amount of nightmare causing rides for small children = many. We had a most devestating experience on Frog and Toad's Wild Adventure, which caused extreme caution for the rest of the day. Avoid most rides in Fantasyland. And I was sad to find that most rides had a very scarey element. The Tiki Room, for example, now has an adult-like outdoor area to wait, complete with a juice 'bar' and booming, loud Tiki God's that take turns coming to life and shooting fire. This was not helpful for convincing a four year old that the upcoming closed room only included animated birds and flowers. Even Tarzan's treehouse, which used to be the Swiss Family Robinson House, had a frightening, growling tiger that sent Moriah running.
Moriah was smarter than us and figured out that the outside rides were the most pleasant, while those that disappeared into the dark were most frightening. Rides that were great fun for her were: King Arthur's Carousel, Dumbo, Mad Hatter Tea Cups, Its A Small World, Autopia, and believe it or not, Splash Mountain. Hit all rides geared for just smalll children early in the day because they close in late afternoon to prepare for the fireworks. We were sad to miss out on the Pirate Cove Adventure and the Petting Zoo. What made the day the most successful was focusing on meeting the characters which was so age appropriate and what Moriah truly loved. If you forget your autograph supplies like I did, they have official pens and autograph books you can purchase for less than $10 in Main Street as you come in (whew!).
If you have not heard of the amazing software called Ride Max, check it out! A few engineers in Southern California got together and studied the ride wait times and put together a program where you can plug in a bunch of different factors and it willg enerate a daily schedule for you that uses fastpass and the least amount of wait times. That being said, it was a great source of information to us, but since we did not know which rides would be a hit and which would not, we had to do a lot of plan changes.
We also were able to take advantage of the Stroller Pass. This little known trick was great! Arriving at Autopia we discovered that Elianna was too small to ride, so we asked the cast member at the entrance and she provided us with a Stroller Pass. Jason and Moriah entered the ride (using a fast pass), while Elianna and I climbed up the exit and waited for their return. When they exited the ride I handed Elianna off to him, and Moriah and I walked back up the exit to the cast member. I handed her the Stroller Pass and she put us right back on the ride! Hooray for Disney, this was a family friendly option.
I was suprised to find that the newere Disney pin trading trend was a big hit with Moriah. She had a blast finding cast members to trade pins with and begin a collection of her own. It was not money I had planned on spending, but was glad that we did. If you choose to participate, plan on spending $25 on a lanyard starter set with about 4 pins. If you head to Frontierland you will find the Trading Post that is a pin shop and probably the cheapest place to get started. For every $30 that you spend you can purchase a collectible pin for $1, and I purchased Moriah a 10 year pin trading anniversary pin (and then put it away so she would not trade it). If you find cards that have two pins on them this seems to be the cheapest way to get started. For a total of about $60 Moriah had more than enough pins to keep and trade for the afternoon.
I think that is more than enough info. I will post some pics when we get them downloaded. Overall it was a most fun adventure that Moriah loved, and she has been talking about non-stop. Despite what everyone said, one day in just Disneyland was more than enough, and should hold us over for the next 4 or 5 years until we feel ready to visit again.
TTFN...ta ta for now! (Tigger)
Friday, July 9, 2010
Whip It!
Here is a trick I recently discovered.
Like whipped cream? Love it? Me too! Ever looked at the ingredients of those lovely whipped toppings in the store? yeah....I know. Rivals Twinkies. Well here is a healthy-ER alternative.
Buy a big thing of whipping cream at the store. For those of you unaware, you can find this in the milk section. Bring it home, dump it in a bowl, and add a couple teaspoons of honey. Then start up the hand mixer and get to whipping! Whip it until it is stiff and has a 'dry' look. Then it is done!
You can use it immediately on the dessert of your choice, but what I just discovered this week is that it is freezable! Get yourself some small containers, like lidded aluminum mini-loaf pans. If you are kind to them, they will also be reusable. Portion your whipped cream into these containers, cover, and freeze! When ready to use, take them out and let them sit for a bit, just like our favorite frozen whipped hydrogenated topping. Presto! Real whipped cream!
Like whipped cream? Love it? Me too! Ever looked at the ingredients of those lovely whipped toppings in the store? yeah....I know. Rivals Twinkies. Well here is a healthy-ER alternative.
Buy a big thing of whipping cream at the store. For those of you unaware, you can find this in the milk section. Bring it home, dump it in a bowl, and add a couple teaspoons of honey. Then start up the hand mixer and get to whipping! Whip it until it is stiff and has a 'dry' look. Then it is done!
You can use it immediately on the dessert of your choice, but what I just discovered this week is that it is freezable! Get yourself some small containers, like lidded aluminum mini-loaf pans. If you are kind to them, they will also be reusable. Portion your whipped cream into these containers, cover, and freeze! When ready to use, take them out and let them sit for a bit, just like our favorite frozen whipped hydrogenated topping. Presto! Real whipped cream!
Wednesday, July 7, 2010
A few things
Here are a few things I learned recently that you may not care to know.
- Foster Farms Dairy feeds their chickens solely corn and soybean meal. (bummer)
- Oats are cross contaminated with gluten due to sharing the conveyor belt with wheat.
- NO chicken has hormones; it is illegal in the US.
- When buying ground meats, there is no cross contamination between meats when buying poultry due to FDA laws. However, the machinery may not be cleaned between grinding meats such as beef and pork.
- Just for fun, here is the link to those lists of insect parts, etc that the FDA allows in your packaged foods: FDA food defect list
- Foster Farms Dairy feeds their chickens solely corn and soybean meal. (bummer)
- Oats are cross contaminated with gluten due to sharing the conveyor belt with wheat.
- NO chicken has hormones; it is illegal in the US.
- When buying ground meats, there is no cross contamination between meats when buying poultry due to FDA laws. However, the machinery may not be cleaned between grinding meats such as beef and pork.
- Just for fun, here is the link to those lists of insect parts, etc that the FDA allows in your packaged foods: FDA food defect list
Wednesday, June 23, 2010
The Eye of the Storm
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!
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!
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.
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