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.*
Tuesday, August 23, 2011
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.
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! :)
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.
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.
Monday, August 8, 2011
The tougher side of things ~ With some sunshine.
So, I know that I've stated before that as Duncan grows feeding him becomes easier, but also becomes more challenging. It has now been several months since Duncan literally dug into my plate at Whole Foods with his fork and then basically cried in frustration that he couldn't share with me.
A few weeks ago I posted about how we were grateful for Ruby Tuesday's but that we really wanted some new haunts to be able to go to. Well, over the past couple of weeks we've found just that. Some new places to eat and we've had a mishap or two.
We now know that Duncan can order a children's plate with steak and steamed broccoli at Cheeseburger in Paradise and a child's chicken/steak plate with a plain baked potato at Longhorn. But, that doesn't really solve any price point dilemmas, although Cheeseburger in Paradise is a teensy bit cheaper than RT's and Longhorn.
In the last post I wrote about how we can now have Five Guys (Woohoo!) and last night we found two new places as well!
For over a year now I've been eying a restaurant called Pei Wei which is located in the same parking lot as Whole Foods. However, I've never eaten there because usually I'm at a loss with Asian food. I grew up eating Japanese Hibachi (which is painfully wounded up here in NOVA) and on rare occasion had Chinese Food with my grandparents when I was very small. I wasn't really exposed to Chinese food again until Dave and I began dating and I was never sure what anything was so I always just ordered the same thing for the most part until recently. We finally found a Chinese place locally that gives descriptions of their dishes and that was all that I needed to try new things.
So, back to Pei Wei. Two weeks ago when I made my trek to Whole Foods Kristina went with me. It was lunch time and we were discussing whether to eat in Whole Foods or whether to go to Pei Wei. Ultimately we decided to eat at WF's but decided to try Pei Wei some time.
That brings us to last night. Last night Dave and I had to go to Dulles Airport to get a rental car for him for the next couple of days. Not only is the AC out in my car Dave's car has some issues that makes it un-drivable. So, instead of us being stranded for two days (which tomorrow isn't an option because Duncan has his last insurance paid therapy visit) he decided to redeem some of his free rental days; a perk of traveling all the time.
While in Williamsburg we were both pretty frustrated on Friday night. We wanted to go out to eat, but wanted to find somewhere that Duncan could also eat. Duncan ate incredibly poorly the majority of the week and he typically eats a fair amount when he gets a plate at a restaurant. But, Dave and I didn't want to be forced into the same food all over again. We wanted the excitement of letting Duncan eat in a restaurant & the benefit of not packing his dinner as we were in a hotel Friday night vs. our condo that we were in for the week prior. However, after two hours of searching online, Yelp and phone books online we came up empty handed minus Longhorn and Ruby Tuesday's.
Earlier in the day we ate at a BBQ place surprisingly owned by an Italian. It was delicious. The chicken was 'plain' and just smoked. Duncan loved it. However, it would become obviously later in the evening via his bottom that it apparently wasn't 'plain' chicken. Poor fella. So, he had yummy food, but his GI tract and bottom had to suffer. But, again, while searching for dinner we were not quite aware yet of this misfortune.
So, last night here we were again on Yelp!. Here we were again *hoping* that we would find something and it wouldn't take hours to do so. After clicking around for a few minutes Pei Wei popped up. They have their menu online and an allergy menu online. Now, let me say, allergy menu's are often inaccurate (and Pei Wei's definitely was - you can't tell me that the ten Coke Products that you serve are corn-free - etc.) but their menu did show promise for Duncan. So, Dave and I decided to take the dive and take Duncan to Pei Wei near the airport.
After a bumpy start once the lines of communication were truly open from the restaurant's side of things they bent over backwards to suit Duncan. He was able to get rice noodles (true Asian Rice noodles - NO Corn!!! or gluten) with chicken sauteed in ginger and garlic water and steamed broccoli, carrots and snow pea pods. YUM! I actually LOVED my dish, honey glazed chicken with brown rice (which doesn't actually contain honey and the brown rice tastes like the brown rice we buy for Duncan - though he could not have their white rice...corn vitamins - it was enriched.) And Dave liked his dish as well. The best part? They totally adapted Duncan's kid's dish and didn't charge us more for it. Even better? Our total was nice and you don't have to tip here. :) So, your total is truly your total. Dave and I do intend to write the Pei Wei corporate offices and also write letters to Tony, the guy that took our order (you place your order and then sit) and Mario the manager. The whole experience once off the ground was wonderful! They definitely have made Pei Wei customers of us. :)
Across from Pei Wei in the same parking lot was a smoothie place. I wanted to go in just to see if there was any chance of Duncan getting anything there. I'm typically never optimistic about smoothie places as most generally use pre-mixed syrupy junk that comes in a milk cartoon or 'fresh' fruit that has been frozen with preservatives such as ascorbic acid, vitamin c, or mixed tocopherols (vit. e.) which are all corn. But, this place had the words 'healthy food' listed under their title. That's quite a bold statement to make. This is the first smoothie place EVER that I've found that uses fresh fruit. Well, and to be truthful any restaurant, smoothie place, coffee house -any where- ever that uses truly fresh fruit. They get fresh produce in often, dice it themselves and then freeze it themselves without any preservatives so that they can actually make smoothies that are, well, cold. We were SO stoked! We may not have an ice cream place that we can take Duncan to, as I know I've longed for, and it make take us 40-45 minutes to get there, but we now have a smoothie place to take Duncan to!!! Thank you Robek's! He has as many choices as they have fruit! It's fantastic! We didn't get Duncan a drink last night because we just finished supper, but we're going to go back sometime as a special treat.
And the best part to top the night off? They have a playground right beside the smoothie place! So, now if I want to take Duncan out for a day. We can go grocery shopping at Wegman's, eat at Pei Wei, grab a smoothie and play on the playground. :) This is a big thing! This can and will alter our generally mundane routine.
Thank God for progress, good fortune and answered prayers.
I am mommy hear me roar. And, I WILL find food for my youngin'. Yes, I just said, "Youingin'" ~ for all of you unfamiliar with Southern terminology that translates to "young one." :) I will feed my child and I will feed him well!
A few weeks ago I posted about how we were grateful for Ruby Tuesday's but that we really wanted some new haunts to be able to go to. Well, over the past couple of weeks we've found just that. Some new places to eat and we've had a mishap or two.
We now know that Duncan can order a children's plate with steak and steamed broccoli at Cheeseburger in Paradise and a child's chicken/steak plate with a plain baked potato at Longhorn. But, that doesn't really solve any price point dilemmas, although Cheeseburger in Paradise is a teensy bit cheaper than RT's and Longhorn.
In the last post I wrote about how we can now have Five Guys (Woohoo!) and last night we found two new places as well!
For over a year now I've been eying a restaurant called Pei Wei which is located in the same parking lot as Whole Foods. However, I've never eaten there because usually I'm at a loss with Asian food. I grew up eating Japanese Hibachi (which is painfully wounded up here in NOVA) and on rare occasion had Chinese Food with my grandparents when I was very small. I wasn't really exposed to Chinese food again until Dave and I began dating and I was never sure what anything was so I always just ordered the same thing for the most part until recently. We finally found a Chinese place locally that gives descriptions of their dishes and that was all that I needed to try new things.
So, back to Pei Wei. Two weeks ago when I made my trek to Whole Foods Kristina went with me. It was lunch time and we were discussing whether to eat in Whole Foods or whether to go to Pei Wei. Ultimately we decided to eat at WF's but decided to try Pei Wei some time.
That brings us to last night. Last night Dave and I had to go to Dulles Airport to get a rental car for him for the next couple of days. Not only is the AC out in my car Dave's car has some issues that makes it un-drivable. So, instead of us being stranded for two days (which tomorrow isn't an option because Duncan has his last insurance paid therapy visit) he decided to redeem some of his free rental days; a perk of traveling all the time.
While in Williamsburg we were both pretty frustrated on Friday night. We wanted to go out to eat, but wanted to find somewhere that Duncan could also eat. Duncan ate incredibly poorly the majority of the week and he typically eats a fair amount when he gets a plate at a restaurant. But, Dave and I didn't want to be forced into the same food all over again. We wanted the excitement of letting Duncan eat in a restaurant & the benefit of not packing his dinner as we were in a hotel Friday night vs. our condo that we were in for the week prior. However, after two hours of searching online, Yelp and phone books online we came up empty handed minus Longhorn and Ruby Tuesday's.
Earlier in the day we ate at a BBQ place surprisingly owned by an Italian. It was delicious. The chicken was 'plain' and just smoked. Duncan loved it. However, it would become obviously later in the evening via his bottom that it apparently wasn't 'plain' chicken. Poor fella. So, he had yummy food, but his GI tract and bottom had to suffer. But, again, while searching for dinner we were not quite aware yet of this misfortune.
So, last night here we were again on Yelp!. Here we were again *hoping* that we would find something and it wouldn't take hours to do so. After clicking around for a few minutes Pei Wei popped up. They have their menu online and an allergy menu online. Now, let me say, allergy menu's are often inaccurate (and Pei Wei's definitely was - you can't tell me that the ten Coke Products that you serve are corn-free - etc.) but their menu did show promise for Duncan. So, Dave and I decided to take the dive and take Duncan to Pei Wei near the airport.
After a bumpy start once the lines of communication were truly open from the restaurant's side of things they bent over backwards to suit Duncan. He was able to get rice noodles (true Asian Rice noodles - NO Corn!!! or gluten) with chicken sauteed in ginger and garlic water and steamed broccoli, carrots and snow pea pods. YUM! I actually LOVED my dish, honey glazed chicken with brown rice (which doesn't actually contain honey and the brown rice tastes like the brown rice we buy for Duncan - though he could not have their white rice...corn vitamins - it was enriched.) And Dave liked his dish as well. The best part? They totally adapted Duncan's kid's dish and didn't charge us more for it. Even better? Our total was nice and you don't have to tip here. :) So, your total is truly your total. Dave and I do intend to write the Pei Wei corporate offices and also write letters to Tony, the guy that took our order (you place your order and then sit) and Mario the manager. The whole experience once off the ground was wonderful! They definitely have made Pei Wei customers of us. :)
Across from Pei Wei in the same parking lot was a smoothie place. I wanted to go in just to see if there was any chance of Duncan getting anything there. I'm typically never optimistic about smoothie places as most generally use pre-mixed syrupy junk that comes in a milk cartoon or 'fresh' fruit that has been frozen with preservatives such as ascorbic acid, vitamin c, or mixed tocopherols (vit. e.) which are all corn. But, this place had the words 'healthy food' listed under their title. That's quite a bold statement to make. This is the first smoothie place EVER that I've found that uses fresh fruit. Well, and to be truthful any restaurant, smoothie place, coffee house -any where- ever that uses truly fresh fruit. They get fresh produce in often, dice it themselves and then freeze it themselves without any preservatives so that they can actually make smoothies that are, well, cold. We were SO stoked! We may not have an ice cream place that we can take Duncan to, as I know I've longed for, and it make take us 40-45 minutes to get there, but we now have a smoothie place to take Duncan to!!! Thank you Robek's! He has as many choices as they have fruit! It's fantastic! We didn't get Duncan a drink last night because we just finished supper, but we're going to go back sometime as a special treat.
And the best part to top the night off? They have a playground right beside the smoothie place! So, now if I want to take Duncan out for a day. We can go grocery shopping at Wegman's, eat at Pei Wei, grab a smoothie and play on the playground. :) This is a big thing! This can and will alter our generally mundane routine.
Thank God for progress, good fortune and answered prayers.
I am mommy hear me roar. And, I WILL find food for my youngin'. Yes, I just said, "Youingin'" ~ for all of you unfamiliar with Southern terminology that translates to "young one." :) I will feed my child and I will feed him well!
Sunday, August 7, 2011
Praise the Lord for Peanuts and Five Guys!
So, with Duncan's laundry list of allergies fortunately, so far, peanuts are not included on his list. Peanuts are not a true nut, but actually are a legume in the same family as soy. Fortunately for Duncan, he's okay with soy (for the most part...there is a back story...but it's not the purpose of this post.)
For our Vacation (we met my family in Williamsburg for a week,) which started last weekend, we decided to leave on Saturday night instead of Sunday morning as originally planned. The AC in my car is out and it was supposed to rain on Sunday. So, a long car trip + unpredictable traffic + a toddler with asthma + no AC and rain on the horizon which = windows up also ='s not a lot of fun potential. So, Saturday night after Dave's plane landed was the optimal time to make the drive. After re-arranging the car a bit to fit Dave's suitcase in we were on our way. We did have to go a little around our elbows to get to our thumbs to get to the correct highway - but all was well. Then, we hit traffic. So, we hopped off and being familiar with the area decided to grab a bite to eat...except what? We didn't want Ruby Tuesday's again. What could Duncan have besides Ruby Tuesday's or Cheeseburger in Paradise that wouldn't cost us around 40.00? Hmmm...
Well, Dave and I had discussed several weeks ago giving Five Guys a try. Duncan has done exceedingly well with dry roasted peanuts and very specific organic peanut butter. So, we were ready to make the leap to peanut oil. Though there is always anxiety related to trying something new I was fairly confident, in a not completely sure type of way, that this was going to go well. We knew Duncan could at least try the fries. The only ingredient in question is a de-foaming agent in the peanut oil which comprises all of .04 or .004% of the oil. Since I've never read about a defoaming agent being comprised of corn (usually it's just the opposite ~ used as a foaming agent in soaps, etc. ) I decided to take the plunge without substantially investigating this particular ingredient. It made me feel reckless and a tad bit of preemptive guilt if something were to happen - but we tried.
Five Guys cuts all of their fries fresh on the premises. They even tell you where they get their potatoes from that day. They have one person that does only fries to prevent cross-contamination. They also only use beef in their patties. No flours, fillers or preservatives. Just Beef. Also, they grill their buns on a separate grill. I was very nervous and very specific but all was well. They also salt fries individually by order so there were no salt worries. As I've stated before regular table salt is processed with corn.
Everything went very well. There were no problems while Duncan was eating, after he got done eating (and trust me, I was very nervous for two hours post - eating ---- it can take 2 hours for anaphylaxis to set in - we were driving in the dark so I kept checking on him quite a bit) and no problem days later on his bottom as a delayed GI type of reaction.
So, we have an answered prayer in the form of peanuts and Five Guys. :) We have had a couple of new exciting developments that I'll share later. But, as for now I have to convince little man that after this episode of Dinosaur Train that it actually IS bed time. :)
Again, WOOHOO Five Guys! :) I'll still be nervous every time we eat there for a while, but at least it's a new option, and a cheaper one at that.
I do have some pictures also, but I haven't yet figured out how to post them. Maybe soon.
For our Vacation (we met my family in Williamsburg for a week,) which started last weekend, we decided to leave on Saturday night instead of Sunday morning as originally planned. The AC in my car is out and it was supposed to rain on Sunday. So, a long car trip + unpredictable traffic + a toddler with asthma + no AC and rain on the horizon which = windows up also ='s not a lot of fun potential. So, Saturday night after Dave's plane landed was the optimal time to make the drive. After re-arranging the car a bit to fit Dave's suitcase in we were on our way. We did have to go a little around our elbows to get to our thumbs to get to the correct highway - but all was well. Then, we hit traffic. So, we hopped off and being familiar with the area decided to grab a bite to eat...except what? We didn't want Ruby Tuesday's again. What could Duncan have besides Ruby Tuesday's or Cheeseburger in Paradise that wouldn't cost us around 40.00? Hmmm...
Well, Dave and I had discussed several weeks ago giving Five Guys a try. Duncan has done exceedingly well with dry roasted peanuts and very specific organic peanut butter. So, we were ready to make the leap to peanut oil. Though there is always anxiety related to trying something new I was fairly confident, in a not completely sure type of way, that this was going to go well. We knew Duncan could at least try the fries. The only ingredient in question is a de-foaming agent in the peanut oil which comprises all of .04 or .004% of the oil. Since I've never read about a defoaming agent being comprised of corn (usually it's just the opposite ~ used as a foaming agent in soaps, etc. ) I decided to take the plunge without substantially investigating this particular ingredient. It made me feel reckless and a tad bit of preemptive guilt if something were to happen - but we tried.
Five Guys cuts all of their fries fresh on the premises. They even tell you where they get their potatoes from that day. They have one person that does only fries to prevent cross-contamination. They also only use beef in their patties. No flours, fillers or preservatives. Just Beef. Also, they grill their buns on a separate grill. I was very nervous and very specific but all was well. They also salt fries individually by order so there were no salt worries. As I've stated before regular table salt is processed with corn.
Everything went very well. There were no problems while Duncan was eating, after he got done eating (and trust me, I was very nervous for two hours post - eating ---- it can take 2 hours for anaphylaxis to set in - we were driving in the dark so I kept checking on him quite a bit) and no problem days later on his bottom as a delayed GI type of reaction.
So, we have an answered prayer in the form of peanuts and Five Guys. :) We have had a couple of new exciting developments that I'll share later. But, as for now I have to convince little man that after this episode of Dinosaur Train that it actually IS bed time. :)
Again, WOOHOO Five Guys! :) I'll still be nervous every time we eat there for a while, but at least it's a new option, and a cheaper one at that.
I do have some pictures also, but I haven't yet figured out how to post them. Maybe soon.
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