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Showing posts from December, 2012

Day 25

We are living in a world of too much food. It's terrible to think of the people who have nothing and are starving, while here I am acknowledging all of the excess of milk containing items everywhere. On one hand there are people dying of starvation, and on the other there are people dying from eating. Both scenarios are compelling and urge a call to action. Growing up I was always told the phrase "beggars can't be choosers". I can usually relate that concept to anything in life. Somehow now, in this part of my journey, I can't relate anymore. Now I think beggars SHOULD be choosers. The people in need or have the most at stake, the most on the line, need to be not just heard but listened to. Food allergies (like world hunger) are treated like a BIG concern for someone else to deal with.

Day 24

Today we had to run errands so I was on high alert for contact reactions. I told Sophia that she was going to have be very careful about what she touches, and help Mommy to keep her safe. She did a great job. She didn't have any reactions while we were out and when we got home she washed up on her own and even brushed her teeth! I am so proud of my 3 year old. This is a great routine for everyone to remove their shoes and wash their hands when they get home --to not bring home germs in general. Later, a small contact reaction developed but overall we made it through the day unscathed.

Day 22-23

I recently read an article in a medical journal comparing the quality of life between a food allergy and type 1 diabetes as the same. Although I can see the generalized reasoning, I was surprised that the medical advisors in this journal would even put that comparison together for the readers. Common knowledge of food allergies is so rare in the general public. Even though everyone seems to have heard of a child in someone's class that has a peanut allergy, I have yet to meet one single person that has heard of an anaphylactic milk protein allergy, unless it was a family living with it. So I think it is a mistake to take an unknown condition and couple it with a known condition, and then say they are about the same in comparison. This just leads to more confusion when, I think, these medical journals have a great platform to initiate social responsibility for food allergies. What I mean by "social responsibility" is that as a society we should watch out for one another.

Day 20-21

As a parent of someone with a life threatening food allergy, I am completely selective about who we spend our time with and the environments we play in. It's not without reason that I am this way because the choices I make affect my child. There's also a lot of ambiguity that follows that decision making. It helps when people are conscientious enough to say they just came from eating pizza, or simply tell us that they washed down before coming to see us. That sort of scenario always plays in a FA Mom's head until the underlying questions are answered with open communication. I'm not very good at letting the elephant just stand in the room. I can turn any conversation into a FA mini-series at the drop of a hat, not fun conversation but definitely warranted at times. It comes with great relief and gratitude when people who aren't having to manage life with food allergies, make a conscious effort for those who are. They recognize that their actions when choosing to be

Day 19

It's incredible that my three year old is becoming  so aware of her life threatening food allergy, I'm feeling like it's resonating! These days,  every day sparks another reason to engage in discussion about food allergies. Today she had another contact reaction to something unknown and she came and told me! I'm not used to that. Today her reaction was really itchy, different from yesterdays that was painful.  I'm not sure why her reactions vary, but I'm thinking whey and casein contacts react differently in her body triggering different reactions. In any case, she needed a full bath to get rid of the hives that broke out but she felt very in control of it and made me a proud mommy.    

Day 18

Finally a chill in the air with Christmas lights to make our holidays bright in Florida. We made it through a morning at the park with no contact allergic reactions! I LOVE cooler weather when it's essential to be covered from head to toe. It is built in allergy protection at its finest. After an evening watching the manatees swim into a canal to find some warmth, we walked a neighborhood adorned with epic Christmas lights. We had diligent plans to keep everything milk protein allergen free, all while having some fun. The evening was beautiful, well thought out and executed just as planned, until Sophia touched another's stroller while eating a cracker and her lips swelled. The swelling happened so fast that it warranted a wash down AND a Benedryl. There is always a hidden agenda with food allergies.

Day 17

One of the worst words in our language, to me, is the word "normal". What is normal? I'm often consoled by and informed of people's sympathy to our milk-free household. It's perceived that we are not able to have a "normal" diet or do "normal" things. I always seem to receive these comments with a prickly undertone because, in our home, not having milk IS normal. Our normal may not be your normal or anyone else's for that matter. I do not feel like we're missing out on anything as far as not having milk containing substances in the house. Nowadays there are so many GREAT alternatives to everything that keep things safe for Sophia. There's nothing that I just can't live without when it comes to food. For me, peace of mind is my must-have and I don't think it's "normal" to compromise that. Another reason I don't like the word "normal" is the stigma it leaves on everything in its path. I'd lik

Day 15 &16

We're continuing with the day 2-3 allergic symptoms, but otherwise in GREAT spirits. I cannot believe that Christmas is only days away, where has this year gone? The lights outside are adorned with happiness and joy, and I cannot help but to feel completely in the spirit of the moment. One of our neighbors made us allergen -safe holiday treats for the family, and we've been surrounded by the kindness and efforts of so many. Christmas is my favorite holiday and the BEST time of the year. People give more and acknowledge their own many blessings, and they make real efforts to accommodate people in challenging situations. There is just a noble spirit of goodness around. When you are a mother with young children, people are so quick to give out advice in the hopes that they can teach you something about parenting, or that their years of experience justify a level of almost "professional experience". The truth is that no two kids are the same (especially ones with food a

Day 13 &14

Getting it right is not a feeling I contend with often. Parenting a child with a life threatening food allergy really requires a constant balance between a healthy lifestyle and a healthy environment. After a  morning jam packed full of games and preschool (homeschooling) we needed to burn off some energy. With leggings, sneakers and long sleeves (even though it was in the 80's) we trooped over to the park before all of the kids got out of school and bombarded it with milk allergens. Despite my best attempts to wipe down the equipment, and her hands constantly to protect her, she still had an allergic reaction. This one was new and different from all of the others. With this allergic reaction, for the first time, she complained that her throat hurt. I think I know what happened though. She saw a plastic Mickey Mouse ring in the grass and she picked it up. I immediately saw (Thank God) and told her to drop it because she can't touch things without asking Mommy. Before she cou

Day 12

I cannot relate to parents who are spontaneous! There are so many things on my checklist before leaving the house that I cannot imagine hopping in the car and seeing where the day takes us. I'm pretty sure I was that person before being a parent, but really who can remember. I run a tight ship with a plan and a detailed curriculum for every outing now a days. For the past two days we have been doing some remodeling in our home. Because of this, I've needed to get the children away from the dangers and out of our normal "protected" environment. I've tried to keep things outdoor in an open aired environment, but there is always room for error out of my control. Control is something I clench to these days. Controlling our surroundings and the environments we put our daughter into are the "only" things that have prevented allergic reactions and worked for us. Relocating our lifestyle for even a day is a crippling task. It is so easy to get overwhelmed-- bu

Day 11

Mommy has no answers or input on this day. Sometimes we suffer in silence.   We rode an uphill battle in it's entirety today. Having to relocate out of our home for the day and try to keep the environment  safe and fun is a major project for a FA family. We had wash downs, full on baths, and finally, benedryl just to hold it together. Shuffling around in an area not created by you can raise anxiety. All bets are off when a baby gets sick. 2 babies in bed safely now mommy's turn.

Day 10

This morning Sophia decided she was a kitty cat. She crawled everywhere she went and even wanted to eat directly off her plate with no hands! Although I am trying to be consistent with establishing manners, I think sometimes a little imagination serves a bigger purpose. Sophia soon came to me and told me she needed a Benedryl because she had an allergy. She showed me her chest and abdomen which was covered in nickel size welted hives, so swollen they were translucent in color. I believe that she had a reaction to a lingering protein that must had been on our carpet. THIS is why we have the no shoes policy in the house. A bath and a topical Benedryl cleared it up within an hour and a half. It's a scary day when 'our home' is unsafe for our little girl.

Day 9

Sophia's imagination is truly extraordinary! She lives a very protected life and sometimes I worry it borders on isolated. I try to make something new every day that is fun and engaging and provides her with lot's of exercise.  This morning I brought back breakfast and ballet. She climbed onto the counter, selected a music selection from the ipod, and started her beautiful performance. There's a song by Marie Digby called "Miss Invisible" and that is my 3 year old's favorite song! She really thrives at imagination and creativity especially when there's emotion. As I egged her on to do dance moves I had taught her, she pleaded for me to "leave the stage" because she "deserved a turn to make up dances too". I thought about that for some time and, after pondering how the heck she knows what deserve means,  got an overwhelming sense of hope. Sophia is such a strong willed and assertive individual.  I know that will be a very favorable attri

Day 8

I'm obsessed with a book I just received called "Go Dairy Free". Among the scrumptious recipes, insight to shopping milk-free, and calcium absorption and getting enough, it has so much dedicated research on the health benefits of living a milk-free lifestyles. We've decided to take this food allergy on as a family unit and, so therefore, we all live a milk-free lifestyle in our home. Why risk a danger to one of our members? I call us "Meagan's"because we are meat-eating-vegans. Because of this lifestyle change, we have come across a lot of research linked to pesticides and their harmful affects causing disease, food allergy, and cancers which have ultimately shifted our thoughts about milk from a "have to go without" to a "want to go without" mentality.  Having milk around our child is "reckless". We have a "No Milk Allowed" sign at our front door so I get comments on a regular basis regarding it. The most popula

Day 7

Finding healthy meals and snacks that are safe for milk protein allergy can be tricky! I have a picky eater on top of that element so my challenges are very complex. I think every FA parent starts the hunt for the hidden "bad" ingredients by narrowing down what is safe. I went through a label familiarization period when I read the labels and when I could tell it didn't have milk proteins, I happily fed anything to my girl. Then it dawned on me that just because she CAN eat something doesn't mean she SHOULD. This food allergy has really brought our family back to the basics. Whole, natural foods that I select and cook for my family are the healthiest and they give me peace of mind of the ingredients. I have been trying to come up with fun dinners that are interesting to a 3 year old. My success rate needs improvement but I'm glad to say that she drinks her veggies from our juicer. The yummiest recipe I make is like an Orange Julius from the malls. It's 3 oran

Day 6

A quiet, rainy day spent at home doing holiday arts and crafts with our shapes and colors. During a painting session, Sophia's arm broke out with a contact rash. I'm still puzzled as to what she was exposed to. We didn't use anything for the first time so I can't even begin to imagine what got to her. A huge part of the food allergy frustration is contact reactions. It's like invisible dangers that lurk everywhere, and you don't know about them until they have already harmed your child. Luckily today it was mild.

Day 5

As we walked into church this morning the lobby was saturated with baked goods and desserts. The butterflies of anxiety came over me and I reached for Sophia's hand to guide her into Mass quickly.  Who would ever know that beautiful looking baked goods, baked by the hands of our community for an even more beautiful cause, could be life threatening? We made it all through church with no problems. I think today someone Bigger was watching out.

Day 4

The holiday's can be challenging for families living with food allergies. Creating a safe environment, most of the time, means hosting all food events. For my house it also means asking everyone to wash their hands upon arrival and taking off their shoes. There's always that hidden worry that someone ate milk proteins before coming over and there's a morsel lingering on their clothes. But we do what we have to do to keep our family and friend relationships moving on the same path. It's so much easier to isolate your child and yourself  but at what cost? Altering family recipes with safe ingredients has to happen because really what's a family recipe when all of the family can't enjoy it? We are so truly blessed to have a family that tries their best and makes things possible for us to be so close. If we can't get through to the one's who love us then how can we expect the rest of the world to listen?

Day 3

Today we met friends at a tiny park. We chose this location because it is usually bare of vistors, and therefore, I would feel comfortable managing the contacts with WetOnes. The constant worry of any fresh, concentrated proteins from kids eating at the park and using the equipment can be overwhelming enough to not take her to parks at all--but how awful is that for a kid? I got there and surveyed the area only to find an empty muffin bag, chocolate wrapper, a Chick fila wrapping and a bag of buttered popcorn. This is pretty bad, but it's still worse when there are people eating it next to her. I'm thankful we had a fun outing with no real damage control today! I would love to see parks food free with a picnic area set apart from the play equipment. It wouldn't be a perfect solution but it would help...

Day 2

Sophia likes to dress herself each morning as a princess and usually with a dress (pink of course)! On days we have an outing planned, she has to wear leggings (regardless of temperature)to protect her legs from a contact reaction. Her legs are very sensitive to blister looking hives and usually swell so much that her skin physically hurts. So it has become a mandatory rule that pants (or leggings) are required under her dresses. This is much to her dismay, but now at age 3 she understands cause and effect.  Today was an outing to her dentist for a cleaning. I was very cautious when we walked into the office and there were 3 other children running around the toys area.  One child had a bottle of milk (I must assume it's dairy) and cheddar goldfish sitting at the toy box playing with and touching everything. I immediately spoke to the receptionist, knowing Sophia was going to want to play and I was going to have to say no. They understood and took Sophia straight back and began h

Day 1 on the journey

Day 1 I managed to get away to the grocery store alone today. What a beautiful thing. I might as well had been at a spa it was so relaxing. Not having to juggle the demands of two toddlers, negotiating for good behavior, and spending extended time wiping down the cart with disinfecting wipes without missing the spot that will end up having a morsel of microscopic milk protein, and inevitably cause a major allergic reaction! Yes it's amazing to just be able to shop and thoroughly read ingredients. Although Sophia never went anywhere outside of our yard today, she did play with her friends in the neighborhood and ended up having a mild contact reaction on her face and neck. After taking her home and washing her up, the allergy faded then returned after dinner really concentrated around her right eye. It later subsided and appears to be gone at this point.  I put so much emphasis avoiding milk proteins in her diet because I can control that, but it's really hard to control the
This blog will chronicle the life of our toddler, Sophia, for 365 days.  It will lend to the cause of Food Allergy Awareness by creating a birds eye view into the common struggles and victories in the lives of our family. Our intention is to spread awareness that "yes" you can help! I am happy to watch our journey unfold in a way that can be helpful or inspiring to others. Today the seed has been planted. Each day I will write something until we have chronicled a full year in our lives.