Thursday, February 9, 2012

Clearing the...Freeing the...Oh - just fill in the blank!

 
The whole holiday season was full of mostly pleasurable hustle and bustle for us. 

Listening to Santa



Dave got to be home during the holiday season which was wonderful. 

Christmas Town at Busch Gardens


I would love to say, "Oh we've been SO busy" as to why I haven't written since November.  And, in some aspects we HAVE been really busy. 



My niece Kaana's Christening

Working on our motor planning, skills and balance.

Countless hours of allergy-friendly baking

Unwillingly finger painting during therapy for the first time ever!

Making our "Thankful Chain" - each link had something we were grateful for written on the inside.

Waiting to leave for our first day of 'school.'

Feeling rambunctious after our second day of 'school' the following week.

Visiting our family in NC - my niece Riley Grace i.e. - Gracie Bug



But, mental clutter and life re-evaluations have definitely hit Dave and myself pretty hard and heavy in the past few months and clearing and freeing of the mind is a lot more cumbersome than just being busy with 'stuff.'  

Now, I don't want you to get the wrong impression or jump to conclusions.  I am very fortunate to be in marriage built on an incredibly strong foundation and everything is A O.K in that department.  Duncan is healthy and thriving - Thanks be to God.  And, we have a unified family that loves us graciously and endlessly.  

At Kaana's Christening


So, where does the mental clutter come from?

I can't speak for Dave, but for me one constant elephant in the brain is how to be a positive Mommy that states things in as positive a light as possible to our child who has to live a little differently and hear "no" and "can't" quite a bit over something as 'silly' as food.  Food is a necessity.  It breaks my heart to have to use those nasty words, "no" and "can't" and the phrase, "Don't touch" ALL the time with him.  It places undue stress on his little 2 year old mind and makes me a permanent watch tower.  

Duncan on his Second Birthday with the cake trimmings - he ditched the yogurt!  



The mental clutter comes from knowing that my husband has to live day to day in another state, across the country and sometimes across the ocean with the fear of whether our day will hold a severe allergic reaction.  

The reality - Burning and swollen face/mouth and neck.

Welts that eventually become open blisters


Swollen Eyes and Lips - This is at the start of a reaction just seconds in.

Head to toe rash that spreads over the body that follows the line of consumption - very itchy - leads to convulsions sometimes

Swollen and painful joints

Very swollen and painful feet.


Mental clutter comes from the wheels of my mind always turning because I want my son to learn by my example how to be loving, caring, generous and giving.  I want to make sure that I am behaving in a manner that is pleasing to God and teaching my child how to be an honest & caring person.  

At Build-a-Bear for his Second Birthday - Exhuberant because he was getting to PICK and TOUCH!


Last Fall there was a local family that we've never met that had a house fire in which they lost most of their belongings but the most devestating loss was that of their beloved Dog.   I have Dog in caps because he was a member of their family.  Not just a 'dog.'  Through one of my friends I learned of this disaster and Dave and I both wanted to do anything we could to help.  We immediately gathered together Duncan's carseat that he had outgrown recently, toys, clothing, extra hypoallergenic food, some small kitchen appliances that we don't need, shoes, blankies, a co-sleeper, a stroller - etc. I'm not naming all of these things because I want any form of credit for doing this.  I'm naming these things because if you'll notice a lot of them are baby items.  Letting go of baby items has been very difficult for me because I don't know if we'll ever have another biological, or adopted, child again.  So, hanging on to D's baby things was in essence holding on to material possessions that I could look at that would automatically float me back to a place in time when a specific happening was taking place.  Some were good memories and some were bad.  

Our sweet tiny baby.  Six weeks and finally six lbs!


Since the sewage flood in our home in November of 2010 I have prayed that God would give me the ability to let go of things that do not ultimately matter; more specifically - baby and pregnancy things.  This started with most of my favorite maternity clothing being 'ruined.'  But, it wasn't ruined at all - it was Grace allowing me the ability to have to step away with a purpose - even if it was somewhat against my desired will.

So, this prayer has been an ongoing one for me, and for Dave.  In the moments that we learned of that family's need I felt no personal emotional attachment to the things that we both wanted to donate - only Love.   Dave and I have been given so much since our pregnancy.  The first and most important gift that we have been given is tons of love. Through love has come support, prayers, well wishes, visits, food brought to various hospitals, money, the blessings of medical bills magically having a zero balance out of the blue, typical baby gifts for Duncan, shoulders to cry on, transportation when I was too weak/sick/recovering from surgery to drive myself - and the list could go on and on.  

A sweet reminder of how much Daddy loves Duncan - This was left on the computer screen one morning when he had to leave for a trip for Doodle-Bug





Love is a very powerful happening.

Mommy and Duncan's hand and DC Children's March 2011 - Duncan wanted to hold my hand

Duncan and his ultimate protector - Sir Bark's A Lot - Barky Parky


This family that experienced the fire has touched me deeply.  I read the mom's blog. They are an amazing family.  Their desire is to live as raw and as simply as they possibly can with their ultimate focus on doing well for others and  doing what is pleasing to God.

Their blog has helped answer my prayer to have the ability to just 'let go' and clear the mental clutter and free our, Dave's and my, minds.  We have donated more belongings over the holidays, we have re-organized and recatagorized things.   We are slowly working on going through each and every box that we had packed from our townhouse to eliminate what we don't need.  Though looking through my neatly packed boxes is somewhat cumbersome it is very freeing.

Through our deepened allergy exploration we feel the need to get back to basics; to not only clear our material life of clutter but cleansing our minds of the noise as well.  

With this cleansing of the mind, noise and soul we are beginning to trod a new path and go forth with a new purpose.  

God does answer prayers even if it is quietly and over a period of time.  

Even in times of stress, health scares, mental noise and various clutter we are emerging with a new sense of purpose, integrity, values and strength.  

Though corn is Duncan's Kryptonite it is propelling us forward into a purpose filled life.

With the simple wonderment of a child - National Aquarium  Baltimore Harbor - Jan/Feb 2011

































Saturday, November 5, 2011

The Crazy Coupon Lady...

So, when Dave and I still lived in our townhouse our next door neighbors used to lovingly poke fun at me (especially when Dave was out of town) for over taking our living room table and floor with flyers and coupons and making a master list for where I was getting what and what coupons I was using.  They made fun of me until they saw my receipts and saw how much money I was actually saving.  :)  Then, they started asking me to do the same for them.  I offered my help if they would sit down and clip too - but they didn't want to clip so it didn't go anywhere.

Back in those days I didn't have to worry about brands.  I was also blissfully ignorant of the harmful chemicals that most household cleaners contain.  As a result buying big name national brands on sale with a coupon was a breeze.  Dave and I ate what was on sale that week and it all worked out great.  It made me feel good, especially before I started working, to know that though I might not have been earning a monetary paycheck I was essentially earning us money by helping to preserve what we already had in a big way.  It was not unusual for me to save us upwards of 200.00 a month on groceries and household goods.  It wasn't even unusual for me to save more.

*Fast Forward 3-4 years*  Shopping for groceries over the past two years has been a challenge all together.  Every ingredient must be scrutinized.  The quality control of the manufacturers cleaning practices must be scrutinized.  Trust must be placed in manufacturers that they are being HONEST (some are sadly not - which comes as proof by allergic reaction in my child.)  And then of course there is the extended price point of needing to buy pure foods.  Convenience foods are usually not present in our cart but instead we are loaded down with fresh fruits and veggies, boxes of organic yeast free stock, rice milk, gluten free flours, organic cane sugar, honey, molasses and maple syrup, frozen fruits and veggies, canned beans, rice crackers, "squeezy food" i.e. Ella's/Plum Baby food and, of course, our handful of convenience foods that we can buy.

This is, no doubt, expensive.  We are paying financially now for food safety and better health as we are not consuming so many processed goods which is paying off now and will continue to always pay off.  I feel good about the fact that my child doesn't consume a bunch of chemicals even if our pocket book/wallet is sadly crying saying, "Give it back...Give it back."  :)  And oh boy is it ever crying after some trips to the store.

Being from Eastern NC one benefit is lower grocery prices.  This doesn't mean that groceries are cheap there.  But, what it means is that because general cost of living is less groceries are less too.  However, the cost of groceries still impacts people in the same way as it does up here.  It's just that after living up here going down there to buy groceries is amazing because it IS cheaper when you're 'used' to these prices. 

Ex: Whole Foods store brand spaghetti sauce is about 2.50 up here.  In Raleigh it was 1.39.  Right now Whole Foods has a 1.00 coupon our for their sauce.  So, you could walk away with GREAT sauce for .39 cents in you were in Raleigh. 

Another example is I spent about 120.00 between Trader Joe's and Whole Foods back home and it lasted for over a week and I still had food left over.  I returned back up here spent about 175.00 and only walked out of the store with 4 paper bags...   :( 

Now that Duncan is a lot more stable and can eat a wider variety of foods (and after returning back up here and being in total sticker shock again) I decided to coupon seriously.  Duncan also recently mastered scissors so we make cutting coupons a game.  I cut my pieces.  Then, I hand him the scraps and he goes to town cutting 'his' coupons.  

This past week we definitely spent a considerable amount on groceries.  It was time for a full restock (which happens every few months) and I'm not going to disclose the full amount that we spent on everything because quite frankly it's nauseating.  I don't want to think about it.  BUT, what I will tell you is about our coupon victory.


Last week I saw the Bloom Ad ( for NC people Bloom is owned by Food Lion) which advertised Double Coupon Sunday for coupons up to a face value of 1.99.  This was terrific because most organic coupons are for around 1.00.  Usually doubling is only for coupons under 0.99.  So, I shopped heavily online for coupons so much so that we had to replace our printer's ink!   

When all was said and done last Sunday between two different Bloom's and 3 check-outs we spent 100.00 but saved 107.00.  That's right - we saved 7 more dollars than we spent.  With that 100.00 we walked away with 20 cans of organic tomato products, 3 packages of Chobani Little Champions greek yogurt, 15 ish regular Chobani yogurts, several Pacific Organics broths and condensed cream soup products, several bags of gluten free flour, a tub of organic Palm Shortening, Allergen Friendly chocolate chips, ice cream, a frozen pizza, milk, OJ, Sargento Cheese & several other things.  All of these products are things that we eat and use.  We don't buy ice cream of frozen pizza on a regular basis.  The pizza is for a 'cooking emergency' and the ice cream was a treat.

We were SO stoked about our hard work, good fortune and savings!  I am hoping that I can make this a regular trend.  Though I don't foresee being a complete extreme couponer with needing the products that we use.  But one can dream I suppose?  

I used a lot of websites to get my coupons.  But, I also "liked" some places on Facebook and other companies just keep it simple by placing coupons on their webpages.  Harris Teeter is having Super Coupon Days until the 8th.  

Websites:

mambosprouts.com

couponcabin.com

couponmom.com

shopathome.com

grocerycouponnetwork.com

smartsource.com

coolsavings.com

coupons.com

bestorganicfoodcoupons.com

organicfoodcoupons.com



I'm sure that there were more sites that I pulled from.  But, I just simply googled.  Good Luck!!!  

Oh, for NOVA people = Kitchen Basics stock has a lot of flavor is top 8, corn and yeast free & is 2 for 5 right now at Whole Foods and at Giant and Wellington.  

Ash

Monday, October 24, 2011

Shaken to the Core But Finding Lots to Smile About

It has been very difficult for me to put pen to paper, or fingers to the keyboard, to write this post.  I've wanted to post again for quite some time but we've had a substantial amount of life events take place.  One of my dear friend's made a statement online about "just doing it - just starting" earlier this week.  I felt motivated to write this post straight away but couldn't at the time due to my all time love and job - motherhood. 

I've also realized recently fully for myself what my husband has always told me - my mind NEVER stops.  It's always reeling; constantly.  My mind goes faster than I can keep up.  This is in a lot of ways a gigantic benefit to Duncan, coupled with the fact that I have always had to be hyper aware of latex, peaches and coconut due to my mom - and now myself, because I am used to constantly scanning EVERYONE - ALL the time for what they might have touched, eaten or cross-contaminated.  This has undoubtedly saved Duncan many allergic reactions.  

But, I'm not perfect.  And as much as I'd like to enclose Duncan in a perfect corn-free bubble - I can't.  Not at this point anyway.  Though that is not a possibility at this point it our dream to be able to provide a completely corn-free environment for Duncan one day.  

So, our armour and weapon of choice at this point is education.  Despite my very best efforts as Duncan's mother I failed him twice a little over a month ago because he had two severe allergic reactions to corn.  As a mother it is not only emotional and painful to watch your child deal with severe allergic reactions but it is even more painful and scary to watch him go through these reactions knowing that as a mother your primary obligation is to protect your cub with the fierceness of a lioness and that you failed. 

Sometimes, as in these cases, it was through no fault of my own.  But, I still felt like an epic failure.  Not to mention every emotion and vivid memory of my little fella limp as a noodle and as gray as a cloudy day at 4 months old in that hospital room came flooding back with the force of a massive hurricane.  It's scary.  To be honest - I was terrified.  

So, I think that was my beef with writing this post.  I didn't want anyone to be offended, but this is part of his journey and something that I needed to voice.  Writing for me has always been cathartic.  The only way that people who are unfamiliar with true severe life threatening and life altering allergies to learn- is through education - sometimes that education is rendered first hand. Bringing a life-threatening allergen into the path of a highly allergenic child is essentially the equivalent of placing a loaded gun somewhere within the child's grasp and leaving them unattended.  Maybe something will happen - maybe nothing will happen - but it's not safe either way.  And, when dealing with something as small as a peanut (in other children's cases) or as tiny as a kernel of corn that could literally take the life of a person it is no exaggeration to make the above statement.

The after-math of a severe reaction can be just as devastating as the reaction itself for a small child who doesn't have the mental ability to understand what is going on.  In Duncan's case he panicked at bed time for weeks (we're literally talking true panic attacks) because both of his reactions happened close to bed time once he had his pajamas on.  This is a situation that isn't easy to rectify.  But, we've pulled through on the other side and tried to educate Duncan as to what his reactions actually are.

Our Mission is Understanding.  Our Goal is Education and Acceptance.

Since my last posting we had an incredibly successful Food Allergy and Anaphylaxis Network walk.  It was a beautiful day for a walk and we had an immense amount of support throughout the whole experience!  We can not thank everyone who gave of themselves in some way, shape or form for helping us start this beautiful legacy of giving back for Duncan.  This was a beautiful experience for us to learn from others, for us to educate others and for ourselves and others to learn of community support that exists.  It was all around a gorgeous day for our family of three.


We also have been on a roll with coming up with new recipes for Duncan, and ourselves.  Finding a new tasty recipe or new product that Duncan can eat/use is exhilarating.  It makes me feel as though I am doing a good job of hunting and gathering for my young.  I get in ruts from time to time out of exhaustion and don't try anything new. 

However, I've always loved fall and all that it brings: crisp air, beautiful leaves, warm cider and Russian Tea, yummy filling meals hot from the oven and the holidays are just right around the corner.  (Not to mention I love fall clothes!)  Fall also has always been a cleansing time for me.  It's a good time to clear my mind with the fresh air.  I have always felt that just as though the trees shed their old leaves and endure a tough winter they know that intuitively they must do this because something beautiful (Spring) is just on the other side.  In order to get to the beautiful and new in life sometimes it means letting go of the old and holding on strong to your foundation.   That's what fall is to me.


So, I was inspired to flip through my 'normal' recipe books and allergy & vegan books alike to find new recipes that I'd like to try for our family this fall.  Duncan is still trying new foods continually and we are making exciting progress in some arenas.   I'll post more later about our progress because though I know that stating anything here in the blog won't jinx anything I still don't want to 'jinx' ourselves or count our chickens before they hatch.  Just keep your fingers crossed and say some prayers that winds of food freedom keep blowing in Duncan's direction.


Also with fall comes lots of soups and stews.  I LOVE both.  I am a soup-a-holic.  Dave - not so much.  However, last week I made a truly awesome Chicken, Rice and Quinoa (Keen-wah) soup that was fantastic!  It had just the right amount of flavor and tasted like an awesome version of a homemade chicken noodle soup.  Dave doesn't even like chicken soups and he ate two bowls I think!  


So, here's our recipe:
Ingredients -
  • Onion, Garlic & Carrots
  • Sunflower Oil
  • 1 Box of Kitchen Basics Chicken Stock
  • Sweet Peas & Garbanzo Beans
  • Quinoa and Rice
  • Trader Joe's Everyday Seasoning, Sea Salt, Badia Garlic and Parsley, Onion Powder, Garlic Powder
  • McCormick Salt Free Garlic and Herb, Chili Powder and Simply Organic Lemon Pepper
  • 3 Chicken Breast
I know that not everyone that reads this blog loves/likes garlic - but one of Duncan's sensory 'things' is LOVING strong savory flavors such as garlic. I Promise that this soup did not taste like garlic.

Directions
  • Heat pot with a small amount of Sunflower Oil
  • Dice onion and garlic and add to pot
  • Dice/Chop carrots and add to pot
  • Season with Sea Salt and other Seasonings
  • Dice Chicken in pot while cooking.
  • Add Stock
  • Let Boil
  • Add Garbanzo Beans, Sweet Peas, Quinoa and Rice (Small amount)
  • Let Boil until Rice and Quinoa are cooked - then reduce heat.
  • Enjoy!
If you try this soup let me know what you think.  Good Luck and we'll keep you posted on Duncan's progress.

To our recipe repertoire we've also been able to add yummy biscuits of all types, great bread sticks and a so-so pizza crust that I'm sure will improve with practice.


Ash

Tuesday, August 23, 2011

What was left off

So, I just realized that part of a paragraph was left off of my last post.  I guess it got deleted.  I'm still perfecting the art of using a laptop and not letting my hand drag across the touch pad at inopportune times.

Basically, for digestion Duncan is on the Pre-biotic Fiber powder, a probiotic fiber powder a full spetrum digestive enzyme that he takes 2 of every time he eats anything (other than his rice crackers that dissolve in his mouth) and a phenol digestive enzyme that he takes in addition to the other enzymes any time he eats one of the fruits/veggies that are heavy in phenols/sulphur.

That's all

*and I do realize that I also left desserts off of one of the previous posts.  I'll post those sometime soon.*

The beautiful things

So, at some point last week, or the week before, I wrote that we had had several beautiful things happen that I wanted to write about.  So, here they are (and there are too many to put all into this one blog post!)


OT Therapy
I don't write about it often, if at all, on this blog just because this is an allergy forum and not a SPD (Sensory Processing Disorder) forum - but Duncan was granted OT through the county!  This is HUGE!  Monstrously HUGE!  Food and Duncan and SPD and gut issues are inseparably linked.  It's all  a part of him and it always will be.  For those of you who aren't aware of what SPD is (don't feel bad - a little over a year ago I had no clue either) it affects all of your senses all of the time.  The best way I can describe it is like this (and it is a neurological disorder of extremes):
*If you get nauseated or a headache walking through a perfume department in a store - imagine feeling like that all the time with ALL smells.  (Food, animals, juice, garbage, perfume, flowers, grass - etc.)

*If you've ever had a sinus infection and couldn't smell anything for days on end, imagine smelling nothing ever...except maybe having one key scent that either drives you wild or really gets your motor going.

*Imagine if a slight gentle breeze felt like someone was throwing daggers at you that caused the fear and panic you would expect from someone in the midst of a tornado's presence.


*Imagine if your brain didn't process pain normally because your nerves/nervous system couldn't process touch sensation the same way as others so in order to feel anything you harm yourself constantly because actually feeling something, anything, is a strange high.

*Getting dressed and undressed literally feels painful.

*You need tight squeezing shoes (two sizes two small) to make you feel like you know where your feet are so that you can walk properly.


*You can't 'see' things normally because your field of vision gets overwhelmed and your brain blocks certain parts of your vision field out for processing to a certain extent.

*Your brain doesn't make the connection between hunger and eating so you would literally goes days without nourishing yourself if you didn't have someone to force feed you something as small as a cracker.  You ARE feeling hunger - but your brain just doesn't make the equivalent connection to the solution to hunger being that of eating. 


*Imagine feeling so nauseous and off balance every time you lied down that it took you 2 plus hours to fall asleep and ANY teeny TINY noise would wake you immediately from a dead sleep and then you'd start the two hours to sleep process all over again...that is if you ever fully went back to sleep.  Now imagine having a baby like this...and a baby that rarely slept---- ever.  If he did sleep it was so long that it was medically dangerous.


The list could go on and on.  Every sensory kiddo/adult experiences different things.  But, Duncan has SPD.  He barely walked away without an Autism diagnosis (this is due in part to the fact that we had changed his diet and his comfort level/behaviors had improved so much so upon the time of evaluation that he just barely missed the diagnosis.)  


So, what does Occupational Therapy do?  OT 'teaches' children/adults who need help learning natural normal things.  These are the natural normal things that they need to know in order to live and functional normally in society, their own world and most importantly their own skin.  With OT Duncan started talking (in Jan. coming up on nearly 2 years old he couldn't even say Mama - now he can say "Ambulance,")  he started eating, he started eating things that weren't laden in garlic only, he started gaining weight, he started walking without face planting, he stopped spinning in circles for 20 minutes+ to the point of self injury, he stopped biting himself until he bled and he actually started to sleep easily, well and hard.


I can't mentally recall at this point in our journey exactly all of the benefits that we received through OT - but all in all let's just say that OT made Duncan's ability to be the best Duncan he could be possible.  In the past couple of months without adequate OT all of the positive progress we had made definitely large backslide type of movement.


We had Duncan's 6 month review with the county (he currently only receives a teacher 2xs a month) infant/toddler supervisor.  She decided that it was imperative that Duncan get therapy through the county as soon as possible since we are in an insurance lag right now (long story.)  He will begin receiving OT 1x a week as soon as a therapist is available. 

WOOHOO!!!!!!!!!!!!!!!!


This could start next week or it could be October.  But in any event SOME therapy is MUCH BETTER than NO therapy.  :)  Beautiful. Beautiful.  Beautiful.  Answered Prayer.


Pro-Thera/Klaire Labs
As some, but probably not many, of you know Duncan is on many digestive support measures including digestive enzymes that he must take every time he eats.  His body does not make enzymes that the average person makes naturally so this has to be supplemented for him.  For digestive health (for a multitude of reasons) he is on: a Prebiotic Fiber powder so that his body actually digests his food and eliminates yeast, a Probiotic


Finding enzymes/vitamins - etc is difficult as corn is used as a filler in almost everything.  I found a wonderful enzyme for Duncan that is working wonderfully from Klaire Labs at our local Healthway Store.  I was told a couple of weeks ago that they would probably no longer be carrying the supplements.  This was a huge bummer as there was nowhere else around to buy this enzyme (or the probiotic powder.)  


So, I called Pro-Thera, the parent company.  I was told by a very nice and polite customer service rep that the reason that their enzymes were being taken out of the health food store was that the supplements were not supposed to be sold retail.  They could either be sold by doctor's in their offices or doctors could call in and allow certain patients to buy direct from Pro-Thera for approved products.


I was 99% certain that Duncan's Ped wouldn't have an issue with 'prescribing' these for Duncan - even though they are non-Rx based enzymes.  The only problem was that we were running out and needed them soon!  I called Duncan's Ped's office and left the traditional message on the nurse line.  The nurse joyfully called me back and said, "No Problem," essentially.   


Here's the beautiful part:  The next day the head nurse called me back.  Duncan's doctor was on vacation, but they had contacted her.  Not only were we being given the code that we needed to order that particular enzyme - Duncan's doctor wanted Duncan to receive his own account with Pro-Thera so that I can order for him whatever he EVER needs from this company with no further permission.  


Duncan's doctor trusts us.  She knows that we have been the large driving force in keeping Duncan's little premie self here and alive and well.  We have figured out things that most people wouldn't, we have kept him healthy, fed and properly medicated (which is a difficult feat when you're child is allergic to the primary ingredient in everything.) - We were even willing to undertake a 10-12 hour drive round trip at one point to get him anti-biotics.  (Thank goodness we found a pharmacy just a little closer that could give DUncan exactly what he needed to heal him and keep him safe at the same time.)  


She trusts us.  To know that his Ped trusts us to the point to say, "You can get your child whatever YOU feel he might need" is amazing.  We love her.  We have always loved her.  And, we feel we have the best Ped in the world.  :)  I could never ever imagine having a better Pediatrician than her.  She cares for Duncan so much she has told me in the past when he was really sick that she would lose sleep over him trying to sort out in her mind what was wrong with him. 


We love her.  In a world full of doctors pushing lots of chemicals, or denying necessarily tests, treatments or supplements/referrals and not listening to their patients, and parents, and writing the average first time parent off with a child that needs special accommodations as over-zealous or idiots - Thank God literally that we have the gem of a Ped that we have!


Beautiful.  Beautiful.  Beautiful.  We are so grateful.




-------------------------------------------------------


Those were the two main items of beauty.  We have had several more including new items added to our safe list such as Virgil's sodas and Izze natural sparkling drinks (this is huge because Duncan needs 'bubble drinks' to give him adequate input through his nerve endings in his mouth so that he is more willing to eat, less likely to make himself vomit on purpose just to feel anything/something and less likely to bite himself.) 

I have found a readily available store-bought jam/preserve that is completely free of everything he is allergic to also.  I have located more Shampoos, lotions and hair care products (Go Me - b/c I haven't used any in two years - and these are free of nasty chemicals too!!!!!!!)  The new lotion is going very well. 

I also made my first extremely successful allergy loaf of bread in two years!  YAY!  It tasted like normal bread from a bakery!  And, I made some scrumptious strawberry muffins that will definitely have a repeat performance.  I also, in a bit of serendipity (one of my favorite words - it means a fortunate accident,) figured out a great brownie recipe.  And, I had some very thoughtful friends share some recipe and ingredient ideas with me on Facebook.


Oh, and you want to know the best most beautiful thing ever?


A few days ago Duncan and I were cuddling and watching one of his cartoons.  I said, "I love you Duncan," and kissed him on top of the head.  He glanced at me sheepishly and then looked away so I wouldn't 'see' him and said, "I Love you Too Mommy."  


Priceless.  Those moments don't happen often, but boy when they do they are beautiful.

 

Saturday, August 13, 2011

So, What do we eat?

Very often I get asked, "So, what does he eat?" with 'he' meaning Duncan.  I usually respond, "Mostly fresh fruits and vegetables, some meat and vegan soy protein cheese."  But, all in all that's not that descriptive. The older that Duncan gets the more I get to experiment because there are more products that are appropriate for him.  So, for the sake of saving a lot of words I'm going to make a list.  Here is a sample of some breakfasts, snacks, lunches and dinners (and desserts!)  

Keep in mind that everything is free of the following ingredients as well as their many, Many, derivatives:
Corn
Gluten
Egg
Dairy
Gelatin
Yeast
Coconut
Mango
Banana
Peach
Avocado
Tree Nuts
Shell Fish
*And I'm sure there's more that I'm leaving off...Fortunately we just added phenols back in with success.  Because without the phenol/sulphur foods that excluded apples, red grapes, peppers, tomatoes, cocoa, and bananas (but bananas were already a no go)

Breakfast (When he actually eats):
*Whole "Grain" Multi-Berry Muffins (tastes like Berry Bread.)
* Toast (not so yummy - his version anyway) with peanut butter or homemade jams/preserves - or plain/with honey
*Fresh Diced Fruit
*Crackers and Peanut Butter
*Fruit Pizza (Biscuit Dough with Pear Sauce and Strawberries on top)
*Homemade Hash Browns/Pancakes
*Homemade Granola Mix with Vanilla Gluten Free Granola, Pumpkin Seeds, Sunflower Seeds and Dried Cranberries/Mixed Berries. 
*Mochi (Pronounced "Moh-Chee" - yummy rice bread sprinkled with cinnamon, sugar and vanilla dipped in honey!)

Lunch:
*Applegate Farms  Deli Meat
*"Pizza" i.e. toast with vegetables and occasionally some form of sauce on top.
*Cheese and Beans
*Chips and Salsa
*Crackers and "Dip" (Baby food swirled on top of crackers)
*Alpha-Tots (Hypo-allergenic French Fries)
*Fresh Sauteed Veggies
*Sauteed Chicken with Garlic and Herbs
*Rice Pasta with Veggies and "Cheese"
*Fresh Fruit
*Organic Peanut Butter and Homemade Jam
*Sunbutter and Jam
*Baby Food
*Anything we can get him to eat & anything listed in Breakfast
*Left-overs from Supper


Supper:
Supper can take the form of anything listed above, anything we can beg Duncan to eat and anything listed below + more.
*Grilled anything and everything (When Dave is home.)
*Sauteed Chicken
*Sauteed Steak
*Stir Fry Duncan style
*Santa Fe style Rice Pasta
*Sauteed mixed veggies
*Sauteed Green Beans
*Home-made dairy free mashed potatoes
*Tortillas/Skillet Bread
*Quinoa (Pronounced Keen-wah...it's super yummy!)
*Basmati/Jasmine Rice
*Roasted Potatoes
*Boxed Mashed Potatoes (Yes, I cheat sometimes!)
*Honey Ginger Chicken with Carrots
*Soups - any and all kinds that I can make for Duncan
*Homemade Sweet Potato Fries


Snacks:
*Beans
*Cheese
*Several Types of Rice Crackers
*Chips
*Fruit
*Juice
*Baby Food
*Granola Mixture
*Pureed and Pressed Fruit Bars (Think a thicker, healthier Fruit By the Foot/Fruit Snack.)
*Homemade Goods such as oatmeal sticks, cookies - whatever's on hand.
*Smoothies
*Fresh Juice From the Juicer (It turns out like sorbet)
**This list could go on forever...so this is just a few samples


Obviously all of these foods are not quite what they appear on the surface.  They require trips to 'specialty' stores, very specific brands and research and aren't your average joe type of ingredients and brands.  But, we are establishing a sense of normalcy within Duncan's food routine that looks very similar to what other kids his age might happen to eat if they were eating 'fresh' (i.e. non-prepackaged) meals.  Well, at least what I'd like to think I'd be feeding him with if he were to not have his allergies anyway.


So, this is a sample of what Duncan gets to eat.  Quite Frankly...it's all pretty darn yummy! :)

It makes you want to cry ~ but forces you to laugh

You feel tears well up on the outside, and on the inside you're sobbing, for reasons that your child is not yet mature enough to understand.  But, because of the sheer beauty of the moment you're forced into a smile, a chuckle and sometimes full blown laughter.  These are the moments that we have from time to time that shake us out of our 'norm' for a second and make us realize exactly how different we are as a family and then make us realize how fortunate we are to view the world a little differently than most.

One of the most recent specific instances that I'm speaking of is at some point over the last week Duncan picked up a piece of paper when we were discussing going out and held it in front of him like a children's menu as though he were reading and said (in his British accent,) 

"Can't have that, Can't have that, Can't have that, CAN have a'teamed (steamed) bock-a-lee (broccoli,) CAN have a'teamed 'kini (zucchini,) Can't have that, Can't have that, Can't have that."


Our first emotion was a mix of humour with the first "Can't have that," and extreme cut you to the core sadness immediately followed when we realized the depth of what he was experiencing and enacting.  He is 28 months and is able to verbalize in a pretend scenario what the future was getting ready to hold for him when we went out to the restaurant.  Though we obviously know that these experiences affect him on a very deep level to watch him enact this was extremely sad for us as his parents.  


We want the world to be a world of "can" for him which is why we control his changing environment (i.e. where we take him - etc) so much so at this age.  We know that hearing, "can't" and "no" constantly for a child is damaging and frustrating.  But, in Duncan's world there are a lot of "can nots" and a lot of "don't" vs. a lot of "Sure's" that he should be getting.  He literally tantrums (and rightfully so in his own right though we definitely don't approve) in Whole Foods when we're on the Baby Food/Spice aisle if another child comes on to the aisle and he has to watch yet another child get to PICK something out that they desire.  He does not get to do this.  He gets told what he can have (which isn't much.)  He screams at the other children "NOOOOO DON"T TOUCH!  STOP! PUT i' BACK!"  He has tried to take something out of other children's hands before (which I was able to prevent before he actually reached the other child...I'm his mother - I can read his mind at times,) he has reached over into other people's carts to try to take things out of little babies' hands, he has hit me, bitten me, banged his head on the floor and pushed items back deep into the shelf cavity out of frustration.  

People often ask, "He's two now, hasn't he outgrown his allergies?"  "Well, he looks healthy and he hasn't been in the hospital for a while he's fine now, right?"  And the questions go on and on of that nature.  Well, not to toot our own horn but he is doing so well and is NOT in the hospital because we work our little behinds off on a constant day to day, hour to hour, meal to meal basis to keep him healthy.  It only takes one mistake to endanger him and make him suffer.  

Perfect example:  Dave and I were given gift cards in a generous amount to a restaurant that we used to frequent but haven't been to in quite some time.  We both ordered menu items that typically we wouldn't order if we weren't using gift cards and delighted ourselves in some dessert to bring home and eat later.  We absolutely grilled the kitchen manager.  GRILLED.  She was incomparably mis-informed on some things - it was obvious that she didn't exactly know her game...but thought that she did.  She softened a bit once she asked us how we 'knew' at such a young age that Duncan has so many severe allergies, and odd ones at that.  When we gave her a 3 or 4 sentence basic standard over-view of how we 'know' she literally looked shocked.  She squatted beside the table to talk to us and softened her voice.  I could tell that she wasn't used to getting people with severe allergies and ones as well informed as us.  She was going to assure us that Duncan's steamed broccoli was safe.  


Later in the evening once home (a couple of hours later) Duncan was sleeping (he fell asleep in the car) but was incredibly uncomfortable and writhing in his sleep. We saw odd behaviour before this point but weren't quite prepared for the full swing of what was ahead.   It was a very rough night and a reality check, again for us.  For those that are skeptics if they could have been with Duncan that night it would have added some weight and depth to everything that they 'hear' us 'say.'  He writhed in pain and screamed out and sobbed for hours.  He was terrified and in pain because he didn't understand what was happening.  He didn't understand what was happening because to his most likely memory he hasn't had an experience on the inside quite this devastating.   After a very large full-scale allergic reaction size dose of Benadryl and an hour and a half of time his body was finally calm, or exhausted, enough to let him sleep for a couple of hours. 

My tiny precious baby. 

No matter how large he becomes he will always be my 5 lb neonate with breathing apparatus strapped to him and wired and tubes everywhere. He will always be my extremely sick 4 month old lying in a hospital bed dubbed as the 'mystery baby.'  It's not until you have a child, birthed or adopted, and had to watch them suffer without the ability to help them feel better, nor any doctor, medicine or ER help them, that you realize how much it just stinks to not be able to fix your child.  To help your child even be comfortable.


Was it the broccoli?  We don't know.  Was the broccoli treated with a pesticide wash that was corn based (most are) that wasn't rinsed off well, or at all?  Was something else blanched in the same water/pot that we were assured was broccoli only?  Was salt or olive oil added to the water?  Is he allergic to the wash/dry cycle detergents/fillers/sheets that were used on the napkins. Usually we take our own home-made cloth napkins/small burp cloths but have noticed that at most restaurants with cloth napkins he doesn't have a problem.  He touched the napkins, ate off of the forks and put his hands in his mouth.  Did someone touch his plate (usually we take him his own plates, and we did this night - but he also ate off of a restaurant plate) after touching something else?  Was there residue on the table?  Was there something left behind on the booth that touched his hands before he sucked his thumb?  Did he eat some kind of crumb from off of the floor while going under the table to go from Dave's side of the table to mine?  Who knows?  We'll probably never know.  Will we ever try this restaurant with him again, or at least in the near future?  No.   Will Dave and I go back to this restuarant again?  Most likely.  I'm a sucker for their soup.  I love soup.  And I really love one of their soups.


It is these instances that are the 'proof' for any who need that yes, indeed, he does have severe allergies.  We literally had to question for a short amount of time whether to take him to the ER or not.  It's not that the ER could do anything for him...he can't have any of their meds.  But, in the event that it progressed to the point of him needing his Epi-Pen at least we would be there.  These are the things that we try to protect him from.  The unknown.  The general world.  Yes, it is unsafe for him.  And, until he can navigate it for himself we have to do it for him.


We did have a lot of truly beautiful things happen this week for Duncan, but that is a separate post because I don't want anything 'ugly' in a post that deserves true light for the beauty that it actually is.  We had a very up 'up' week with some bittersweet lows. 

No matter how difficult our path is Dave and I are incredibly grateful that we have a knowledgeable view into a world that most well-meaning well-intended, and those that are truly ignorant, don't understand, don't live in and just don't get.  It might seem odd, but Dave and I have both always been lovers of people and lovers of communicating and connecting with people.  Though I know I am jaded at times both of us have the type of personality that is extremely analytical.  We analyze everything...all the time...every situation, every action, every reaction etc. etc.  So, having one more group of people that we can truly identify with, connect with, support and contribute to is a good feeling.  


I began life in this allergy world journey  due to having a mother with severe allergies that almost took her life, and yes, I recall being a seven year old child with a mother hanging in the balance in an ER.  It's scary.  So, we've always taken it seriously.  Very seriously.  

My game was stepped up when I experienced life threatening anaphylaxis three times in college.  And, we jointly, were thrust even further into this world when our Gift was bestowed with allergies to the point of almost passing on us.  So, yes, we are passionate.  Are we over-zealous?  Absolutely not. 

If you're reading this and you view us as over-zealous, or know someone who does, then I would challenge you to almost experience the death of your mother as a child due to someone's negligence, experience anaphylaxis for yourself (which doesn't end when the 'shock' is over - I vomited for days because my body was coming off of steroids and pain killers (though it needed more,) my eyes were almost swollen completely shut for days & I couldn't even eat bread for almost two weeks my throat was so swollen and sore - liquids only,)  and then watch your child literally hang in the balance of life and death for months and then have two heart stopping episodes back to back where passing pretty much happened before he fought his way back - and then look within yourself to see if you would feel that our actions are 'over-zealous' or 'over-protective.'  If you would still feel that way then you're emotionally disconnected and you need help for your own sake.


We are Duncan's parents.  He has been entrusted to us.  We are the ones that will have to answer, as we believe, to God when we pass for our actions in this world.  It is our obligation as Duncan's parents to keep him alive.  Yes, alive.  Something as tiny as a kernel of corn literally can kill our child.  Scary to think about, but it is true.  Something as teensy weensy as regular table salt rips the skin on his bottom open and causes free flowing bleeding. 


That may be graphic for some of you readers, but it's the truth.  We work as hard as we work because we have to.  He is doing as well as he is doing because we have worked our heiny's off to get him healthy.  His pediatrician still remains floored that I have kept him healthy and feed him the variety of foods that he gets because she has parents that can't, won't and don't for much easier to avoid allergens.  His county pre-school teacher even has parents whom have intubated their children with special dietary needs because they don't want to put the work forth into finding food to feed their children.  (It is a LOT of work.  A LOT.  I will be honest - but it is a labor of love.)  

  It is no one else's obligation or responsibility to keep Duncan safe and do the things that we do for him willingly and gladly.   It is also our delight to watch our living breathing child grown, learn, laugh and love.  Though it is no one else's obligation, nor responsibility, it is the social obligation and social responsibility of other's who come into contact with our child to not only respect our wishes, but respect our child, enough to keep him safe also.  Some family members have endangered him to test limits, to be 'funny' and some just because they are stubborn and selfish (which is the saddest of all.)

  So, sucking his thumb that he sucks = not cool or safe...definitely not funny.  Taking a bite of his food and then letting him take a bite = dangerous.  You can't share with him.  Eating something with your dominant hand and then using that hand to give him food...not okay.  


These are all things that have to be gradually introduced to those whom have not grown up in a severe allergy environment they way that I did.  It has been indoctrinated in me.  It is natural.  But, respect, patience and understanding go a long way.  For those of you who are already on our side of the fence Thank You!  We can not thank you enough.  For those of you straddling the fence and still learning PLEASE ask us questions, ask us about our experiences, what it feels like to have these reactions, what can be done to be prevented, etc.  And for those of you on the other side of the fence we doubly encourage you to ask questions!  Everyone starts somewhere and we would, and never could condemn, someone for wanting to learn not matter how silly you might feel your questions are.  We hope one day you'll join us on the other side!  Duncan needs YOU on his team and we would love the support!  We all cause a ripple effect.  The more people that know, understand and can share - the more understanding will be passed through all of society.  


Remember:  Duncan needs you.  He loves you and one day when he grows up and can understand he'll want you on his 'team' too.  Please grow with us, learn with us and share with us. 


This month in Living Without Magazine there is an article called something like "Ten things that the Severely Food Allergic Child Wants you to Know."  For copyright , and technical posting reasons, I'm sure I can't scan and re-post the article here.  But, they do make their articles available to the public online.  So, maybe good their magazine and take a gander at the article.  It's definitely worth it!  A lot of it is information that we'd love to say to other's for Duncan because he can't yet.


Thank you all for reading our blog.  Just by reading our blog it shows that you support and love us in some way.  All we want is safety, happiness and joy for our child.  That's what we all want as parents, right?  :)


Pride.  As sad as the first moment listed above was - we were proud.  Proud parents that our child understands his situation even though it is a bittersweet one.