Quiche

    So, thanks to Xolair injections over the last 2 and a half years, Vinnie's allergies are becoming *WAY* more manageable.  One major change is that he is no longer reactive to shared fries or ovens!  

In August, he passed the BAKED EGG food challenge at National Jewish Health in Denver.  We were so excited to add a food into his diet!  

Being allergic to raw egg but safe to baked egg is very tricky.  When eggs are baked--to a certain protocol-- the proteins change and become something that you can tolerate.  For Vinnie, it is a VERY sensitive measure.  We experimented with some store bought products and unfortunately had an ANA episode.  

The "baked egg" rules, that we follow are:

1. One egg per cup of regular flour, it cannot be gluten free

2. The dish must be baked at 350 degrees for a minimum of 30 minutes.

3. Store bought products, should follow both of the first rules *AND* have egg not appear in the top 3 ingredients.  Since most foods don't include their recipe or bake times/temps, we have to make reasonable guesses about the preparation.  

So far, we've found ONE safe food that he can eat as much as he wants, that we can buy, and its pecan swirls, by TastyKake.  

So, all of that said, to explain that we can now cook RAW EGG in the oven and Vinnie doesn't have anaphylaxis!  The last time I tried to make a quiche, we lived in Virginia and moving wasn't even on our radar!  

So, I used this recipe, from The Gingered Whisk, to make homemade mini-quiches for dinner!  I made Vinnie's up first. I used Jus-Roll prepackaged puff pastry, Just Egg egg substitute, Ripple milk substitute and Daiya cheese substitute.  I added bacon into his, but no spinach, and he LOVED THEM! He ate 3 of them, so it was a real like too!  He ate, while the allergic real egg ones for the rest of the family, were cooking and he did not have any reactions! Isn't that amazing?!  We are so excited. 

 I didn't risk cooking his while ours were in the oven, because it was super snowy out and I didn't want to risk having to leave the house.  We have cooked allergic and safe pizzas in the oven at the same time with no anaphylaxis!  Xolair has been so good for him!

Vinnie safe mini-quiche above and my quiche, steak, and sausage below. 

 

Renaissance Baking!

    In September 2021, Lucas joined a LARPing group for homeschoolers.  The overarching theme for the year was the Renaissance.   He has been loving the group & creating his own little immersive world for live-action-role-playing.  

His character's name is Toka and he has an entire, elaborate back story.  He is a rags to riches half-elf knight hero.  His origin country is known for the green hair all their native people have.  So, Lucas has had green hair for months now!  

As an end of semester celebration, there was to be a Christmas Feast!  Unfortunately, because of the windstorm that knocked out power across much of southern Colorado Springs for a week (5 days for our house!) it was postponed until January 8, 2022.  The meal was designed to be a potluck with each family providing a "renaissance style" dish.  We chose to bring dessert, so that it would be safe for Vinnie.  Ultimately, the fearless leader "Queen Amaterien" asked everyone to make sure their dishes were dairy, egg, and peanut free, so EVERYTHING at the feast was safe for Vinnie! 

Initially, I had volunteered to bring cupcakes, but then realized that the dishes were supposed to stay "on theme" and cupcakes wouldn't have existed during the Renaissance.  So, I set about doing some internet research.  

I came across Layers of Learning's post about Renaissance Small Cakes and knew that would be a good fit for our dessert!  I read through the entire post several times and the recipe quite a few more, then began preparing to bake the small cakes.  I had to adapt the recipe to fit our dietary needs and available ingredients but the cakes turned out DELICIOUS!  We called them "Currant Small Cakes" for the party.  

This is the recipe I used:

3 cups flour
¾ cups sugar
about 1.5 cups of raisins
¾ cups olive oil based margarine, room temperature
2 ½ Tbsp. Sweetened Condensed Coconut Milk
1 Bob's Red Mill egg replacer egg

3/4 of an applesauce cup (each cup is 1/4 of a cup of applesauce & I just added some until the mixture had enough liquid)
¼ tsp. nutmeg
4 Tbsp. water

I did have to kind of "eyeball" how things were going as it was VERY dry to start with. I added the applesauce a little at a time as extra egg substitute.  I also added a tablespoon or so of water.  

When the dough was able to bind together I added in the raisins.  I added them 1/2 a cup at a time until the dough seemed like it had WAY too many raisins in it!  It turned out to be just enough but I don't think it would have hurt to have added the full 2.5 cups called for in the original recipe.  

Steps:

1. Mix flour, sugar and nutmeg in a bowl with a fork.  

2. Add in softened or room temperature margarine & stir with a fork.  It will be quite dry & lumpy.  

3. Prepare the Bob's Red Mill egg replacer egg and sit aside to rest.

4. Stir condensed coconut milk in a bowl to incorporate ingredients.  Then measure required amount into another bowl.  

5.  Add the water to the condensed coconut milk.  Start with what the recipe calls for, you can add more later. 

6.  Add in the egg replacer and blend the wet ingredients.  

7.  Add the wet ingredients to the dry & mix with blender.  In our case, it was still VERY dry and wouldn't fully incorporate.  

Optional:  Add applesauce in small amounts and even a small amount of water, until the dough comes together and is no longer dry.  

8.  Add in raisins a little at a time and stir with mixer.  

9. Shape dough into about 1" balls and place on baking tray.  I used ungreased/lined non-stick pans.  Gently flatten each ball with 3 fingers or a fork to make them slightly flatter than round.  (This will help them bake more evenly, quickly.)

10.  Preheat oven to 375*.  We are at 6500 ft. above sea level, so we ended up needing to bake them for 16 minutes per batch.  You may need to adjust the timing.  What I did was start with a small tray and after they looked done (lightly golden brown on the bottom & fully baked on top) I pulled them out & opened one with 2 forks.  The dough was slightly undone when I tried to make them as "balls" the way the original recipe states.  

11.  Optional-- glaze with frosting or royal icing.  I use this royal icing recipe from Lauren Kossack!  

Makes:  Slightly more than 3 dozen cookies, after some tester cookies were gobbled up!  These formed a dense cookie with a nice sweet taste.  The raisin flavor was not overpowering.  The spices were evident and delicious!  The finished cookies were about 3/4" tall and 1.5" wide.  

Since I knew raisins weren't going to go over well, I kept looking and found another recipe for regular sugar style cookies.  I also learned that during the Medieval/Renaissance time, cookies (as we know them) would have possibly been called jumbals.  

I found this recipe from Anachronists Cookbook on Instructables Cooking for sugar cookies!  

With our dietary adaptations, this is the recipe I used:

Ingredients:

1/2 lb of flour (yes I used a kitchen scale for all measurements)

1/2 tsp. of ground cloves (and man are they expensive!!)

1/4 tsp. nutmeg

1/4 tsp. marjoram (I wasn't splurging on saffron & this is a spice I bought at thanksgiving time that was suggested as a replacement in a recipe that also called for saffron)

1/4 lb of sugar

6 oz of olive oil based margarine

1 Bob's Red Mill Egg Replacer egg

1 TBSP apple cider vinegar mixed with white sugar--I added sugar so that it dissolved into a thick liquid but didn't smell as vinegary anymore (as replacement for sweet sherry)

1 TBSP sweetened condensed coconut milk

Sugar in the Raw (for dusting the cookie dough balls)

Steps:

1. Combine flour, sugar, nutmeg, marjoram, and cloves and stir with a fork. 

2. Stir in softened margarine.  

3. Prepare the Bob's Red Mill egg replacer egg and sit aside to rest.

4. Prepare apple cider vinegar with sugar OR use sweet sherry.  

5. Stir condensed coconut milk in a bowl to incorporate ingredients.  Then measure required amount into another bowl.  (Because I made both recipes this was already done, also I had a TON left over, so maybe find another recipe to use this ingredient in so it doesn't go to waste!). 

6.  Combine "egg", "sherry" and "cream" in a bowl and blend. 

7.  Combine wet and dry ingredients and blend.  I added a little extra applesauce (the last 1/4 of a the cup from the earlier recipe so 1/16 of a cup) but it made the end result a little more wet than it probably should have been.  

8.  Preheat oven to 350*.  

9.  Roll dough into small balls about 3/4" and then roll in a bowl of raw sugar.  Then place on tray.  Then gently press down on each one so it is flatter than it is round.  

10.  Bake for 8 minutes.  Again, we are at 6500 ft above sea level and I used a trial and error process to determine my baking time.  

Makes:  About 4 dozen small cookies, the end cookies were about 1.5" wide. These cookies turned out soft and moist. They were chewy.  They were the clear favorite and are all gone the next day.  When I make them again I will definitely double the recipe!  

Many thanks to the original authors of the recipes for their research & sharing their recipes!  Let me know if you try either of these or my adaptations!  

Anaphylaxis Sucks Take 2

I stayed up all night (literally until 3 am) on Thursday sewing myself a new bathing suit, so that we could go to Water Country USA with Reesha and her kids.  I had cut out the fabric 2 years ago but never gotten around to sewing it up, because my serger was broken.  Since Tim got it fixed this week, I've been sewing like crazy! Its a little on the small side but totally wearable (with a sports bra for modesty) and I love it! :)

We got up to Water Country around 11:40 am, Reesha ended up hitting mega traffic and didn't get there until closer to 1:00, so we had a long wait & a picnic in the van. 

After we got our passes from Reesha the kids & I headed in to the wave pool and then to the Kritter Korral, but before we could get in the KK, it started to storm.  So we had to hide from the rain under the pavilions. 

Reesha finished lunch with her kiddos and joined us there for a while, then we wandered back to Aquazoid, hoping to be in the line when it reopened.  We ended up waiting for over an hour, before they opened a few rides up.  We headed back to Hubba Hubba Highway because we heard that it was open.  The kids all enjoyed that for a while.  When we were done there we headed to Meltdown.  We waited in the queue for what seemed like forever, one of the kids had an accident, and Lucas FINALLY  started to board a raft, when they got the call to shut down the ride because of the rain. The kids were all quite frustrated.  (So were us grown ups.)  

So, we headed to the bathroom to get the kiddo cleaned up & then to Cowabunga play place.  All of the kids enjoyed playing there for a little while.  Around 6, Reesha was headed out and then they suddenly decided to close the park entirely because of the storm systems that were moving in. So we all hustled to get out of the park.  

We went to the candy shop and let the kids get some candy and then to guest services to get rain passes.  By the time we got settled in the van, Vinnie's legs were covered in hives.  It was around 6:30.  He had only eaten a few of his Sour Patch Kids (from the bulk bin) and some lunch meat.  

We hurried up and got on the road to home and I drove like a crazy person.  We kept an eye on Vin and he kept saying he felt okay, but before we got home he was pale and tired.  As soon as we pulled into the drive-way he utilized the emesis bag I'd given him.  I jumped out of the van, gave him the Auvi-Q epinephrine and called 911 while the kids ran in the tell Tim.

While the EMTs were coming and then doing their thing with Vinnie, I got changed and packed us up.  I also nursed Sulley.  Vinnie decided to ride in the ambulance by himself, and I drove Tim's car behind them. 

The ambulance drivers speed. :) I had to go 10-15 over to keep up with them.  

By the time we got to CHKD ER, Vinnie was still feeling better, but he started to hive and swell up again shortly after that.  

He had a pretty serious biphasic reaction with the second reaction happening around the 3 hour mark and continuing despite benadryl for about another hour and a half.  Then Saturday morning he had hives that came and went all day long, even though he was on steroids and benadryl. 

He also got hives on his face.

The hives did a number on his skin and his eczema is in full flare mode.  We are going to have to be extra careful for a while about food allergies and skin issues.  Throughout it all, Vinnie kept a smile on his face and was as sweet as could be.  One of the doctors literally did a double take when he came in the room, stopped, and said, "Wow, you're a cute kid!"  Ha ha.  Vinnie gets that a lot. (Tim and I cringe because nobody does that to Lucas & he notices.)  

Anyway, we are waiting to hear back from his doc today to find out if she wants to see him, and he is feeling much better. 

Anaphylaxis Sucks

Our sweet Vinnie boy had another anaphylaxis scare yesterday. 

Vinnie made himself a couple sandwiches and used Lucas’ allergic Hawaiian bread slices. He ate about one and a half of them while I was nursing Sulley. That was around 4:00.  He had vomited at 3:00, which we think is a reflux issue he has going on.  (He's been vomiting for no apparent reason for about 2 weeks now.)

I got up to check on him bc he was complaining of an upset stomach. I thought initially it was left over from him vomiting earlier, but as soon as I saw the remnants of his second lunch I grabbed the baby and got everybody in the car. 

Vinnie only had an upset stomach which is a reaction but not ANA. So, we headed to the CHKD Urgent Care. But, before we got there (1.3 mi away) he threw up in the car. I called NJH and asked if I should epi immediately or go the last 5 minutes to the UC. They said go to the UC. 

We interrupted and got straight to the back, as soon as they did the vitals, they ordered epi and Benadryl. He was feeling pretty miserable at that point.  He did *NOT* want them to use the regular epi-pen.  I was actually quite shocked that they used that instead of a needle. 

His sats were a little low so they put him on oxygen. He perked up quite a bit after that. 

We had the doctor that I do not like one bit.  She is condescending and talks down to me.  She said, "You do know we aren't a hospital right?" Um, yea, but you are a DOCTOR right? (literally what I said)  I mean my choices were to stop the car, epi, call 911, wait on an ambulance to get to me in RUSH HOUR traffic in Greenbrier *OR* drive another 4 minutes to a medical facility that specializes in pediatrics--where I could then administer the EPI or let them do it.  When I walked in, I said, "He's having an anaphylactic reaction and needs epinephrine. I can do it or I can wait for your doc to do it."    If he had vomited any further from the Childrens Hospital of the King's Daughter urgent care center I would have epi'ed on my own.  BUT, either way, they needed to either treat him or get out of the way so I could.  The doc is just a pain in the butt.  She was also fussing about Sulley being on the floor.  I'm sorry lady, my concern is with my SICK child, the one who could die from his condition if you don't administer meds soon, I could care less if the babies fingers get stepped on.  Lucas was helping me keep him out of the way, but the doc was being a witch about it. 

Because he was considered in ANA after the vomiting, they called the ambulance from CHKD to transfer us. 

Vinnie got to wear a 5 pt race car harness on the stretcher and I rode in the back seat of the cab. He got to watch Spongebob on their mounted iPad. 

After we got to CHKD ER he was triaged (immediately) and given a slushee. 

He was obviously feeling *MUCH* better by the time we got to CHKD. He'd had benadryl, Epi, and 30 minutes of oxygen by then.  

They took good care of him in the ER.  He got zantac and prednisone & an iPad to play with there too!

Tim and the boys came and brought us the "go bag" and a change of clothes for Vinnie.  So, we were able to keep them all entertained until Mandy got there with food for Vinnie & I (they had finally cleared him to eat just before that) and then Beth came and helped Tim go pick up the Corolla and park it back at the hospital for us.  

After everybody left (around 9 PM), Vinnie and I snuggled and played on the iPad until about 10:20 when the doc said he was comfortable with discharging us at 10:45 if I was.  Since Vinnie seemed okay I was fine with it.  

We got discharged and headed home.  Tim was *JUST* getting the boys into bed when we got there, so I got to nurse Sulley to sleep and Tim didn't have to try to get him down without milkies.  

Anaphylaxis remains a scary event.  Fortunately, this one didn't go beyond some minor facial swelling and hives and the vomiting.  

Trying to Resurrect the Blog

So, I clearly lost my blogging mojo a while back and kind of just let the blog drift into oblivion.  I don't even know if anybody still stumbles across it.  But, I did always enjoy using it as a journaling space and somewhere to keep a record of the fun stuff the kids and I did.  So, now that we are getting the house in order and I have a space where I can sit and type again, I figured I'd give a go at bringing it back to life!   

There's no way to quickly recap the last couple years, so I'll just have to let that be.  Obviously our family has expanded since the last time I posted.  Sulley is the sweetest baby & such a blessing.  I can't imagine our lives without him.  He's our fun and sensitive little red head, so easy going and gentle.  His big brothers adore him. 

Tim is still working as a computer geek and supporting my desire to stay home and homeschool the kids.  I wouldn't change it for the world.  We may not have the biggest house, newest car, or fanciest gadgets but we've got each other and the freedom to enjoy ourselves. 

Lucas is technically in 2nd grade according to the state, but we haven't done any formal "curriculum" with him beyond the "Teach Your Child to Read in 100 Easy Lessons" book, which we didn't even finish.  We got through about 70 lessons.  He is amazing at scripture memorization and is finishing up his third year of Awana Sparks.  He will have earned all 3 years worth of books & the full review for the first year book.  We couldn't be more proud of him!  He is reading a little and LOVES math. 

Vinnie is officially a first grader this year, but we technically "held him back" by opting out of kindergarten and starting him in Awanas late.  He is not yet reading.  He recognizes most letters and can count almost to 20.  He's not interested in "school" work yet and we are trying to give him space and not push him.  He's funny & entertaining.  He recently dyed his hair turquoise!  He kept his long locks until Nov. 2016 when I finally relented and let him chop them off.  He's finishing up the first year of Awana Sparks. 

His health is AMAZING.  We've got his allergies mostly under control.  Seasonal stuff is still giving us a fit but he is down to being anaphylactic to ONLY: milk, eggs, peanuts, and bananas!  He has outgrown SO MANY of his allergens.  We took a 2nd trip to National Jewish Health in February of this year.  They were amazing, just like last time!  When I have more time I'll try to write up the details of those trips!

Its been 2 years and 7 months since Dad passed.  Its definitely easier now.  We miss him.  I have a good cry every now and then.  Lucas is in counselling and we will probably put him in a group grief therapy soon.  He and Dad were close and he has some unresolved issues with the end of Dad's life.  No thanks to Vibra, who denied the kids a chance to say goodbye.  It makes me sad when I think that Sulley will never know his Pap. 

That's all I have time for now. Hopefully, I'll be back soon! I've missed my dear old blog!

A "heart attack"

Amanda, my sister, treated Vinnie & I to dinner tonight at Outback Steakhouse. Unfortunately, before we'd even gotten food at our table, Vinnie found a tiny shred of cheese in the booth and picked it up. My sister grabbed it from him and I rushed him to the bathroom to wash his hands, but it appears the damage was done. By the time I got his hands washed (there was an issue there because they only had heavily scented soap in the ladies room), and back to the table his eyes were swelling, his face was hivey and itchy and he had hives on his stomach. I gave him a dose of benadryl and took him outside and he got some relief from the symptoms. I'll have to re-dose him with medicine at the four hour mark. I'll be watching for a more serious reaction as we near the two hour point (now). *THIS* is why National Jewish is important for Vinnie. His skin is so broken that even casual contact with his allergens can cause a serious (possibly life threatening) reaction.

This is his face almost 2 hours after it happened.  You can see his eyes are still swollen/puffy & the scratches on his forehead and the redness from the hives. (the scratches around his mouth are old)

He'll get 24 hours of benadryl following a reaction like this. 

Things to Ask the Coordinator or Doctor about Denver!

I need to ask about filaggrin mutations when we go, its possible that Vinnie has this & if he does it changes his treatment options.

Keep up with the whole series of posts through these links!

Food Challenges I'd like to do:

Corn
Soy
Crab
Maple
Molasses

Read my first post about Denver here! 
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do

Things to Do In Denver!

Things to Do In Denver:

Denver Zoo/Ronald McDonald House Pass--call & find out if this still exists. :)

Aquarium?

Heritage Amusement Park weekends only

Heritage Square Alpine Slide (opens while we are there!)

Red Rock/Garden of the Gods

Train Ride

Keep up with the whole series of posts through these links!

Read my first post about Denver here! 
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do

Planning For Denver (Part 2)

So, I'm working my way through reading other people's journeys.

Today we found out Vinnie has to be off of his Doxepin for 1 week prior to the program.  Which means he won't be on it for our flight or visiting family.  This gives me a lot of anxiety & I plan on talking to his doctor's tomorrow.

I'm also going to attempt to do a wet-wrap routine at home with Tim's help this weekend.  I want to try it with cotton clothing & see how his skin does.  He doesn't do well with cotton long term--but the wraps apparently only stay on for 2 hours at a time.  I want to see if he can tolerate the cotton clothes, because if he can, that changes how we pack/shop for the trip.

I got a lot of paperwork done today.  I also got a discount towards t-ball, so Lucas will still be able to play, even though he'll miss a whole month.

I need to make a bath toys bag.  Something we can carry back & forth to the hospital to keep all his toys in.

I also need to buy new jars of CeraVe and Vanicream.  And refill his Elidel.  And Triamcinilone.

I need to ask Sarah (our coordinator) about these "nasal rinses" that I am reading about on the blog.  I think its probably something similar to a neti-pot and if so that's scary. I have no idea how Vin will do with that.

Basically, learning more about the program is just SCARING the CRAP out of me. :(

While the parents are in classes/meetings/therapy where are the kids? Do they have a day-care type play room? I'll be alone with Vin at the hospital.

Do we get to use the same hospital room each day? Or do we have a different room? Do we have to carry everything back & forth?

Read my first post about Denver here! 
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do

We're Going to Denver! (Part 1)

In December of 2014, we went to Vinnie's allergist, desperate for help.  His skin was out of control. He appeared to have developed several new allergies through the Thanksgiving holidays.  He was getting sick constantly.  Unfortunately, his allergist, the Head of the Department of Allergy/Immunology at Children's Hospital of the King's Daughters, was just as baffled as we were.  She said at this point she isn't sure what else to do for Vinnie or how to help him, but she did have a little glimmer of hope.  She told me about a program in Denver, at National Jewish Health Center, where they treat kids with severe atopic dermatitis (the fancy name for eczema) and allergies.
That's where we began our journey to Denver.  It took the doctor about a month to get the referral in, due to holidays, weather, and other set-backs.  But, after she did, the process moved pretty quickly.
Within 2 weeks we got the call going over the details and doing the initial "intake" over the phone.
While Vinnie was in the hospital for a stomach virus, at Valentine's we did the processing paperwork and officially decided to go to Denver.
A few days later we got the call to finalize the financial aspects of the trip.  We had to assure them that we understood the costs associated with their program.  We will max out Vinnie's deductibles on this trip and come close to meeting our family deductibles as well.  We will be responsible for paying all of that, via a payment plan over an 18 month period when we get home.
A couple days later we got the "scheduling call".  We took a couple days to go over things and choose the best time for us to go and then called our coordinator up to make things official.  I booked our flights while I was on the phone with her.
Now I have lots of paperwork to take care of, I've been making lists of questions and goals, and rallying support.
Today I got links to blogs/facebook pages of other families who have been to the program.

April 2012: http://www.realfoodallergyfree.com/overcoming-eczema/

May 2012: http://livinginanallergicworld.blogspot.com/search?updated-max=2012-05-08T23:37:00-06:00&max-results=7&reverse-paginate=true

August 2013: https://zoeynjh.wordpress.com/2013/08/08/day-one-njh/

September 2013: https://www.facebook.com/groups/672685026094819/

October 2013: http://jonahlowry.com/

February 2014: https://www.facebook.com/pages/Caleb-Goes-to-Denver/1431419120425855
(This child's AD was labeled as "moderate/severe" and he got to go home a day early!)

February 2014: https://answersforava.wordpress.com/
(This child's skin responded well to the therapy but she was only able to do ONE food challenge in all 10 days.  The doctor's did offer to keep her longer.)

I'll be reading their stories and adding to my list of questions/goals/concerns. Vinnie starts the program on April 13, and hopefully I'll be diligent in blogging our way through it.

Goals:

1. Get his skin healed.
2. Confirm/deny his allergens and plan a good diet
3. Answers about his immunology & why he's always sick
4. Answers about his size/slow growth


Questions:

1. What should we bring?
2. Are there meds/lotions we can buy before we go?
3. Bathing distractions?
4. Medicines to take/not take?


This is the original post in this series.
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do

10 Things Allergy Moms Wish You Knew.... Elaborated

So, this post is making rounds on the internet today, and I felt compelled to elaborate a bit on it, offering insight into MY life. :)

Click Image for Original Post! :)

Being an allergy mom is hard and there is no user's manual!

Rachel Lee Coppola's article hits the nail on the head, so I'll start from there. :)

1. I worry about my child's allergies and constantly have fear for his safety in the back of my mind.

No REALLY, ALL OF THE TIME.  At home, at the store, when we're out to eat, at family or friends' homes, when he's sound asleep, when he's swimming & bathing.  I am ALWAYS worried about what could possibly cause a reaction to start.

If I am not directly responsible for him, I am literally terrified that someone ELSE will make a mistake and give him something he's allergic to. Even his own dad can't recite the list of things he's allergic to.  Nobody else is as vigilant about Vinnie's allergies as I am....though Luke is a close second! :)

Our family and friends are AWESOME and really do try to keep him safe, but ultimately that responsibility falls on me.

2. I wish life were different, but I am doing my very best to make his life AWESOME and NORMAL.

I refuse to force Vinnie (or our family) to live in a bubble.  He is going to be a NORMAL little boy.  I am not going to remove all allergens from our home, because I cannot possibly remove all allergens from the outside world and I need to teach Vinnie and Luke how to stay safe in the OUTSIDE world just as much as at home.

We will go out & do things. We will go to parks that have trees with NUTS on them!  We will go to amusement parks and we will eat in restaurants.

3. It may not make sense to you, but please don't think I'm over-reacting.

This is what it takes to keep Vinnie safe.  Yes, his allergies really are THAT bad.  Please don't judge.  You don't KNOW.  Try walking a mile or a few days in my shoes and then we can talk about how I "over-react".
4. Food allergies can & often do, mean isolation for Vinnie.  Please try to be considerate.

This is the one I struggle with the most.  It is so hard to see Vinnie get left out.  It is difficult to provide snacks or other things so that he can just be one of the kids.  I try, but its not easy.  A little consideration from others and understanding goes a really long way.

5. It is not just a mild tummy-ache type reaction.  The reactions are violent, involve multiple body systems, and can become fatal. 

For real. I have held my passed out child, limp, in my arms and watched him struggle to breathe.  Until you have BEEN THERE, please do not down-play his reactions.  Yes he has many intolerances and there are environmental factors which cause the minor symptoms of his excema to flare up, BUT, his TRUE IgE mediated allergies, can and will KILL him if we do not treat them properly and carefully.  Vinnie has had many different symptoms because of his allergies, including vomiting and diarrhea, but even THOSE symptoms aren't considered "mild".  Imagine the worst stomach bug or food poisoning you've ever had, couple with difficulty breathing, hives, and a sense of "impending doom".  That's what it feels like when your food allergy is so bad you start to vomit.

6. Don't tell me that my child will, "grow out of it!"  I don't know that & neither do you.  Nor do I have time think that way right now.  

I've actually done some research into the matter and read different studies.  Unfortunately for Vinnie, his allergies are SO bad, that he is actually NOT likely to outgrow them.  It is very possible that he will NEVER enjoy the taste of real cheese or a real ice cream cone.  He may never go a day without his Epi-Pen nearby.  I especially don't want this to be said in FRONT of him or his brother.  Don't give him that THING to look forward to, that may never come....because you'll be long gone when I have to break his heart that he HASN'T grown out of it.

7. Yes, a tiny little bit, WILL hurt.

OMG.  Seriously.  Allergic=allergic.  Most recently, Vinnie had a food challenge at the hospital.  I baked cookies that were completely Vinnie friendly, except, I used REAL eggs instead of egg replacer.  He had tested negative to baked egg (a different protein than non-baked egg) and his doctor thought he might be safe to eat it.  There were 2 eggs used in the recipe that made about 4 dozen cookies.  The cookies were about 5" across.  The doctor broke off a piece of cookie that was about 1/4 of an inch round and offered it to him.  Within less than 5 minutes, he had begun to break out in hives.  Now, the amount of egg in that TINY bite of cookie, was incredibly small, but it still caused a full-blown allergic reaction.  He received a shot of benadryl & 4 hours of observation in the hospital!

Vinnie's first life-threatening food allergy reaction that sent us to the E.R. happened after he spilled an EMPTY cup on himself.  The cup had been used for chocolate milk and had a tiny ring around the bottom, that trapped a few drops of milk.  At the time, we didn't even know he had a dairy allergy--we thought it was from the corn syrup in the chocolate!  Maybe 5-6 drops of chocolate milk spilled on his face.  He did not DRINK any of it, but it managed to wipe into his mucous membranes.  Within seconds of spilling the cup, he was breaking out in hives and hysterical.

Another more recent occurrence happened during dinner at my parents' house.  We were all having tacos.  Vinnie was in his clean highchair with his safe cheese & some french fries.  Tim fixed his own dinner and was eating with just one hand (or so he thought).  Vinnie asked for more fries, which were on the main table.  Tim used his "clean" hand to reach in the basket & give Vinnie some.  Within minutes, Vinnie was having a full-blown reaction.  We were able to get him cleaned up & dosed with benadryl & consult his doctor on the phone to avoid the hospital, but literally just the DUST/OIL residue from an offending food touching a food for a few brief seconds that Vinnie would then eat, caused a serious reaction.

We do not take chances.  Vinnie may not have ANY dairy, eggs, peanuts, tree-nuts, blueberries, cherries, bananas, peaches, corn, garlic, penicillin or cleocin.

8.  Please make our lives easier by being aware that dropped food, wrappers, and uneaten-unattended food is extremely dangerous.

You never know who is going to come along behind you.  If Vinnie trips and falls on a floor that may be cross-contaminated he must immediately wash his hands with soap and water.  He has tiny open cuts on his body from his excema and if your allergy prone food gets into those open sores (or any mucous membrane--via wiping his hands to eyes/mouth/or nose) he is then exposed and may react.
Because he is a toddler and not fully capable of controlling himself or understanding his allergies, he still picks things up and wants to eat them!  Your left-over pizza or candy could kill him.  Please clean up after yourself & your children.  That popcorn you spill on the ground & leave for the birds to clean up, it has sent my kid to the hospital.

9. This is NOT a dietary choice.  It is MANDATORY.

This is our life.  I would not CHOOSE to limit our diet this way, if I didn't have to.  We don't get to take a day off.  If we run out of allergy-safe food, we have to buy or bake more.

10.  This is not my fault.  I am just a MOM doing my best to protect my kid from the dangerous world of allergens around us.  I am NOT trying to inconvenience you.  If you don't want to tolerate the things that we NEED to happen, say so and we'll take our business and our friendship elsewhere.  I am doing my very best to keep my child safe, and sometimes, that means I need a little help from you. 

Instead of being put-off by my requests, or judging me, or thinking how HARD it will be to accommodate us, have a little patience, take a step back, and try to imagine just how HARD it is to be a 2 year old boy who can't have the things the other kids do, who can't eat the same snack as the other kids, who can't play with play-dough or eat real snow-creme while all his friends do.
We aren't asking you to walk all day in our shoes, just change the way you do things for an hour or so, so that Vinnie, sweet awesome, fun loving, adorable, little Vinnie, can be a kid too.

So, thanks to Rachel for getting that out there.

Now, I have one more thing I'd like to add, that THIS allergy mom wants you to know.

11.  My kid is AWESOME.  His allergies do not define him. 

He is smart and funny. He is tiny but fierce.  He has a sense of humor.  He loves to eat.  His favorite thing is meat & gravy....to dip french fries in.  He knows he is allergic to many things, but he still gets to enjoy candy and popsicles and pizza and all the other things that our family partakes in.  He is a fighter.  He deals with severe excema breakouts, hives, itchy and swollen eyes, hands, and feet on a regular basis....but he rarely complains.
He is an awesome little dude and I love him just the way he is!  If I could take away his allergies, I would, in a heartbeat, but I can't and I wouldn't change HIM for anything!