Dave is gone again and that brings with it in inevitable hunger strike from Duncan. Yes, that's right, I have a two-year-old that goes on his version of a hunger strike when his Daddy leaves town. As twisted as it is it is sweet to see exactly how much Duncan loves his Daddy in spite of the numerous absences that his job creates.
So, this week I've been doing whatever I can to get Duncan to eat : that includes letting Duncan have bites of cupcakes at all hours of the day and completely unbalanced meals just for the sake of getting him to eat something! My typical policy with D is that I don't care what he eats as long as he eats. Because of the nature of his allergies he doesn't really have 'junk food.' Sure there are a couple of types of ready made cookies that he can eat ~ but they are sugar free. So ultimately when he's pigging out on junk-food he's pigging out on natural pressed fruit bars and fruit-juice sweetened cookies.
Over the weekend it was clear that Duncan needed a play buddy. Since a sibling for Duncan is no where in site and there hasn't yet been the invention of robot sibling in a box we took a five minute ride to Duncan's 'cousin's' house. I say, "cousin" because technically Ethan's Dad was like Dave's uncle growing up even though theoretically he would have been Dave's second cousin. So, technically his son is our third cousin and Duncan's fourth cousin. But, cousin none-the-less and Duncan just LOVES him. :) It doesn't help either that Ethan's mom and I get along quite well either. So, Duncan had to rousing days full of playing with his big cousin and I got to have some adult time. Everybody won.
Why does all of that matter? Well, Ethan's mom K makes these amazing amazing truffles! They are super duper yummy and they type of little chocolate pick me up that you can't just eat one, or two, or three of. So, while wathcing 101 Dalmations I made that statement that I wanted to start pre-planning holiday treats and I sure would love it if I could find some way to make a version of her truffles that Duncan could eat. She has a knack for finding and making good recipes, and allergy conducive ones at that, and after a couple of minutes of searching she found a yummy thin mint recipe that should be easily do-able for Duncan's needs. I'm so excited! I'm not sure when I'm going to try these ~ but I'm definitely trying them! What a feather in our hats it would be to have such a yummy creation that no one could tell was allergy friendly. That is always my goal after-all: to have allergy friendly treats that are so yummy no one ever knows the difference! Slowly, but surely, I'm getting there.
As for the egg? Eh, well...I'm not quite sure what to make of it. Duncan loves the cupcakes though I don't let him have more than half of one at a time. However, loving something is a big misnomer with allergy children. They either won't even taste a second taste of something that bothers them or it's like they crave it and want more and more and more of the very thing that's bothering them. Duncan has had a bit of a diaper rash in precarious places. It has been consistent since about the second day after trying egg and hasn't let up since. It's by far not the worst rash Duncan has ever had - not even close. However, if when we stop the cupcakes in the next day or two and Duncan's rash goes away on it's own then we know it was the egg. He's also had some semi-permanent hives pop-up that just won't seem to easily go away since we've started the egg. There aren't too many of them and they don't seem to be bothering him, but they are definitely an addition to his skin.
So, that's how the egg trying is going right now. Obivously, as I stated before we don't plan on progressing beyond long-bake-baked goods; but it was worth a shot!
Monday, July 25, 2011
Friday, July 22, 2011
Let the Games Begin...
So, I chickened out over the weekend on giving Duncan anything baked with egg. I chickened out about a month ago and I chickened out again. I did however let Dunc try a lactose-free dairy milk that has vitamins derived from lanolin vs. corn/corn cultured. That is another story.
But for now: it's eggs.
So, what happened last year with the eggs anyway? This is a question we get asked from time to time because people remember that Duncan was finally allowed to try egg at about 15 months (where the average baby gets to try egg at 10 months. Except - the average baby before ten months has typically had teething biscuits, cookies or crackers with eggs baked in and they just get to have plain ole' egg - period - at ten-ish months. ) - But, everyone remembers that Duncan can eat egg now, right? Not really. Actually, no.
Duncan's egg trying process at 15 ish months was going to be quite the feat. We didn't try right at 15 months. Mommy brain has set in, but I think it was possibly at 16 months, when we tried egg. We were very nervous, well, because we were! Duncan had a mild, but still significant, reaction to the flu vaccine. His was cultured in egg. So, we were very precautious. But, when you have food allergic child everything gets tried much slower than the average baby gets to try. It just has to be done that way for the safety of the child and their delicate system.
Our directions from the allergist were to do a week of egg baked into goods that were long bake such as cake/bread. Then we were to do 5-7 days of egg baked into short bake items such as muffins or cookies, etc. Then we were to do 5-7 days of egg in pancakes and waffles. Then, if all of those attempts and trials were successful we were to try plain ole' scrambled eggs/omelet.
The reason for this delicate trial process instead of just diving into some form of home-made teething biscuit or cookie is that some egg allergic people can tolerate egg in some forms, but not others. So, the majority of egg protein is cooked out of egg in breads/long bake baked goods. And everything goes downhill from there. However, there are still people that are very much allergic to egg in any form including air-borne egg smell/proteins in the air. We know one such person.
So, last year's deal:
Everything was going well with the cupcakes/muffin bread or what have you that we started with. Everything went so well in fact Duncan's allergist encouraged us to go to cookies when we were ready. If I remember correctly, again - Mommy brain has set in - we waited around 10 days before moving to cookies. Surprise! The cookies went well. We continued on with cookies and it went surprisingly well. We kept holding our breath and nothing happened! Then, we went to pancakes.
The first day that we made pancakes we made them in the shape of skinny little sticks for Duncan that he could pick right up and bite.
The first day of the trial process Duncan was like a wild dog that hadn't eaten in days finally being given the chance to feast. He just kept eating and eating and wanting more and more! He had a tiny spot pop up on his chest which Dave and I debated but showed no other signs of problems. Before all food trials we would not only check Duncan's skin over completely by site and touch, but we would take pictures in case anything questionable happened (think, was that spot THAT big before?) so we could take secondary pictures later. He always tried every new food naked - with the exception of a diaper.
The second day of pancakes Duncan got a little spotty/red around the eyes and had some slight coughing/sneeze activity and though we were fairly certain that it was from the pancakes Duncan's allergist had really encouraged us to try to get 3 solid days in with the exception being if Duncan had a full blown reaction. So, we tried again on day 3.
Day three elicited a definite major undeniable allergic reaction. With the first bite, not even with swallowing, Duncan's eyes started to water and swell and he started to cough and gasp for breath. He had splotches all over and we had to rub him down NICU style to help his breathing. Of course a large dose of Benadryl was administered. Everything calmed down a bit with his Benadryl and we didn't have to break out the epi-pen or go to the doctor (not to sound...bad...but at this point Duncan had had so many allergic reactions we knew what we could handle here at home and what we couldn't - plus having been someone who's gone into anaphylaxis before I have a little bit of a different perspective as well.)
So, that's what happened with the eggs last year. Duncan's allergist encouraged us to give eggs a go again a couple of months later. He said we should be fine to start out with cookies. So, we did. We tried to cookie. Duncan took a bite or two and started to splotch up, coughed a wee bit and got red puffy watery eyes. The eggs struck again!
So, here we are on the verge of almost a calendar year later trying to play this game, tackle this beast, dance this dance again.
Will Duncan be able to have egg in some form? I'm not sure yet. After charting everything out in-line with Duncan's asthma issues Duncan's allergist feels that there was potential that Duncan's egg issues were asthma induced allergy reactions and not true allergic reactions. (There are so many types of reactions it gets complicated.)
Last night I baked some cupcakes that took about 40 minutes to bake. He had half of a giant sized cupcake and did just fine. He had one small splotch on his chest which we're not sure if it came from his finger (he was pressing on his chest before we started) or from the cupcake. But, there was no major reaction.
We didn't try to cupcakes tonight. This morning he told me that he had a tummy ache before we went to the pool. He seemed to be fine a little later and ate well today. But, the real reason why I didn't want to try it again tonight? I didn't want my son eating part of a chocolate cupcake before bed. :) I'm thinking tomorrow morning after his breakfast he might get a piece of a cupcake:way before nap-time but after his morning pediatric drink.
So, this is our egg story. Obviously, it's not stopping here. Wish us luck!
Ash
But for now: it's eggs.
So, what happened last year with the eggs anyway? This is a question we get asked from time to time because people remember that Duncan was finally allowed to try egg at about 15 months (where the average baby gets to try egg at 10 months. Except - the average baby before ten months has typically had teething biscuits, cookies or crackers with eggs baked in and they just get to have plain ole' egg - period - at ten-ish months. ) - But, everyone remembers that Duncan can eat egg now, right? Not really. Actually, no.
Duncan's egg trying process at 15 ish months was going to be quite the feat. We didn't try right at 15 months. Mommy brain has set in, but I think it was possibly at 16 months, when we tried egg. We were very nervous, well, because we were! Duncan had a mild, but still significant, reaction to the flu vaccine. His was cultured in egg. So, we were very precautious. But, when you have food allergic child everything gets tried much slower than the average baby gets to try. It just has to be done that way for the safety of the child and their delicate system.
Our directions from the allergist were to do a week of egg baked into goods that were long bake such as cake/bread. Then we were to do 5-7 days of egg baked into short bake items such as muffins or cookies, etc. Then we were to do 5-7 days of egg in pancakes and waffles. Then, if all of those attempts and trials were successful we were to try plain ole' scrambled eggs/omelet.
The reason for this delicate trial process instead of just diving into some form of home-made teething biscuit or cookie is that some egg allergic people can tolerate egg in some forms, but not others. So, the majority of egg protein is cooked out of egg in breads/long bake baked goods. And everything goes downhill from there. However, there are still people that are very much allergic to egg in any form including air-borne egg smell/proteins in the air. We know one such person.
So, last year's deal:
Everything was going well with the cupcakes/muffin bread or what have you that we started with. Everything went so well in fact Duncan's allergist encouraged us to go to cookies when we were ready. If I remember correctly, again - Mommy brain has set in - we waited around 10 days before moving to cookies. Surprise! The cookies went well. We continued on with cookies and it went surprisingly well. We kept holding our breath and nothing happened! Then, we went to pancakes.
The first day that we made pancakes we made them in the shape of skinny little sticks for Duncan that he could pick right up and bite.
The first day of the trial process Duncan was like a wild dog that hadn't eaten in days finally being given the chance to feast. He just kept eating and eating and wanting more and more! He had a tiny spot pop up on his chest which Dave and I debated but showed no other signs of problems. Before all food trials we would not only check Duncan's skin over completely by site and touch, but we would take pictures in case anything questionable happened (think, was that spot THAT big before?) so we could take secondary pictures later. He always tried every new food naked - with the exception of a diaper.
The second day of pancakes Duncan got a little spotty/red around the eyes and had some slight coughing/sneeze activity and though we were fairly certain that it was from the pancakes Duncan's allergist had really encouraged us to try to get 3 solid days in with the exception being if Duncan had a full blown reaction. So, we tried again on day 3.
Day three elicited a definite major undeniable allergic reaction. With the first bite, not even with swallowing, Duncan's eyes started to water and swell and he started to cough and gasp for breath. He had splotches all over and we had to rub him down NICU style to help his breathing. Of course a large dose of Benadryl was administered. Everything calmed down a bit with his Benadryl and we didn't have to break out the epi-pen or go to the doctor (not to sound...bad...but at this point Duncan had had so many allergic reactions we knew what we could handle here at home and what we couldn't - plus having been someone who's gone into anaphylaxis before I have a little bit of a different perspective as well.)
So, that's what happened with the eggs last year. Duncan's allergist encouraged us to give eggs a go again a couple of months later. He said we should be fine to start out with cookies. So, we did. We tried to cookie. Duncan took a bite or two and started to splotch up, coughed a wee bit and got red puffy watery eyes. The eggs struck again!
So, here we are on the verge of almost a calendar year later trying to play this game, tackle this beast, dance this dance again.
Will Duncan be able to have egg in some form? I'm not sure yet. After charting everything out in-line with Duncan's asthma issues Duncan's allergist feels that there was potential that Duncan's egg issues were asthma induced allergy reactions and not true allergic reactions. (There are so many types of reactions it gets complicated.)
Last night I baked some cupcakes that took about 40 minutes to bake. He had half of a giant sized cupcake and did just fine. He had one small splotch on his chest which we're not sure if it came from his finger (he was pressing on his chest before we started) or from the cupcake. But, there was no major reaction.
We didn't try to cupcakes tonight. This morning he told me that he had a tummy ache before we went to the pool. He seemed to be fine a little later and ate well today. But, the real reason why I didn't want to try it again tonight? I didn't want my son eating part of a chocolate cupcake before bed. :) I'm thinking tomorrow morning after his breakfast he might get a piece of a cupcake:way before nap-time but after his morning pediatric drink.
So, this is our egg story. Obviously, it's not stopping here. Wish us luck!
Ash
Thursday, July 14, 2011
Reality Wall -*SMASH* -
So, every once in a while we hit this reality wall of:
"What do you want for dinner?"
"I dunno. What do you want to do for dinner?"
And so the story goes on, and on and on. We don't go out very often. Not only is it logistically complicated, but up here in NOVA it's expensive. What might cost you 15.00 back home up here at the same restaurant can cost almost double. We have been very blessed in that Ruby Tuesday's has been a safe food haven for us. Their chicken is not preserved in any way and is delivered fresh from a farm daily, at least in this area. The vegetables are totally fresh and the managers generally have bent over backwards to suit Duncan's accommodations. We also recently discovered that Duncan can eat at least at the local Cheeseburger in Paradise: Steak and steamed broccoli.
However, not every time that we want to eat out do we want Ruby Tuesday's or Cheeseburger in Paradise. Not every time that we want to eat out do we want to spend 30-35.00 plus tip. Not that we really do fast food, but there is no where to grab a quick snack (not even apple slices - they're all preserved with corn,) no fries for our little guy, not even a "Hey, let's go get a sandwich" - which gluten sensitive/celiac individuals have been dealing with for a long time. At least the typical gluten-only sensitive people can have some deli meat, some burgers -etc - at restaurants. Or, they can go somewhere like Uno's and get gluten-free pizza (It is A-MAZ-ING!) - but what about MFA kids?
There are hundreds, if not thousands, of other families out there in the same corn boat that we are in. I'm not down-playing gluten issues by any means or trying to make the indication that living gluten-free is easy...it's not. It's just "easier" than having multiple food allergies and one of them being corn.
On a daily basis when we sit in this NOVA traffic (think I-40 East Bound on a Friday after-noon in the summer NC people) and Duncan runs out of snacks , or drinks, or feels car sick and could use a carbonated drink/ginger ale - etc we're just in a mess. So, daily outings include packing a typically 'large' cooler for the day with snacks, fruits, raw veggies, beans for protein, rice crackers with individual organic PB packets (thank GOD, literally, that he's not allergic to peanuts!) LOTS of cups or back-ups such as bottled spring water (he can't have purified water - think Dasani and Aquafina = no go,) small size individually packed Tropicana OJ's or Rice Milk's (thank goodness there are at least 2 'box' drinks he can have) pressed fruit bars, cookies (though not the type of cookies that might pop into your head) paper towels and tissues and wipes (Duncan can't use standard TP, tissues, or paper towels or wipes - darn the corn again) - etc. The list could go on.
So, every day that we go out we lug usually two huge bags as well as our cooler, sometimes two coolers, out to the car. The first bag is our 'take-in' bag for where-ever we might go. The second bag I refer to as the "Oh Crap" bag. I don't say this in front of Duncan, mind you, but mentally that's what I refer to it as. It is usually fully stocked with an extra package of our Jackson Reece wipes, paper towels, 3 additional spare cloth diapers, at least 2 extra pairs of shorts, a pair of pants and at least 1 clean shirt. Since Duncan is not getting as car sick as he used to we don't "need" our sick bucket and clean-up kit, though they're still in the car. We carry our big cooler with tons of ice-packs and a spare small cooler, sometimes pre-packed, for carrying in to where we might go. Fortunately we are no longer having to carry his nebulizer and ALL of his meds each time we leave home. That was an additional cooler & small bag whenever we were having to do that. Now we just take epi-pens and compounded benadryl with us.
So anyway, back to the story of "what's for dinner." What is for dinner? Every mom and wife out there knows this is a frustrating question at times. In our case it's a daunting question that when we want to go out leads to either boredom (think Ruby Tuesday's for the 50th time) or just lack of new ideas due to limitations; so we stay home. That's exactly what we did tonight: Stayed home.
I fell asleep while putting Duncan down for his nap and woke up way too late to consider defrosting or cooking anything. Inevitably we did end up cooking at home. But, we hit the frustration wall. We wanted something new. Something adventurous. And, there was nothing; again. Sure, Dave and I could have had supper out and just taken something for Duncan. But, I did not want to do that Again. Yes, again.
That's our story day in and day out. Sometimes you just want a break from reality and fixing Duncan a meal here at home at 7:30 then driving somewhere to get something to eat, having to sit down, wait for food, and then drive home just did not seem appealing. On top of that some restaurants are beginning to be less understanding about us bringing food in now that he is old enough to eat off of the children's menu. As he gets older this will just increase.
Sure, there are laws protecting establishments from people bringing outside food in for the health and safety of people eating in the restaurant for contamination issues. However, what about people like us who NEED to bring outside food in for just that: health reasons? It's hard for some managers to believe that there is literally NOTHING in their establishment that fits Duncan's dietary needs. That is the story more often than not. I can not tell you how many LONG restaurant visits we've had (think 2 hours plus) where somewhat frantic and annoyed managers have gone back and forth to the kitchen for 30 minutes, plus, bringing us food labels because "THIS doesn't say CORN anything" only to be floored that the citric acid, potassium sorbate, Vitamin C, mixed tocopherols and SURPRISE - the salt contain corn. Then I have to explain how, and where they can find the information for themselves online.
Or, how many times we've had unknowing people tell Duncan in a restaurant, or grocery store, for that matter, "Tell your Mommy you want X - it's REALLY good!" and then that lead to a total meltdown because Duncan can't have X. The worst is when in a restaurant a waitress will suggest a "grilled cheese" to Duncan. Duncan L-O-V-E-S cheese. However, currently the only cheese he can safely consume is Vegan Gourmet cheese. That's it - and it's not that readily available at the average grocery store - much less available in a restaurant.
So, this is our situation. We want to take Duncan out. WE want to eat out for our sanity from time to time to break of the monotony of our little bubble. But, we're typically stuck. It's not really a complaint as much as it is a frustration. It's a frustration that we're grateful for in a lot of ways. Our child is not eating processed GMO chemical laden junk (and yes, that Juicy Juice that you think it healthy...it's not) - but being able to give him a 'normal' experience of getting to PICK food off of a menu, to take him out for ice cream or sorbet, to be able to let him even pick products in a store instead of "this one is the one that you can have" ~ these are our every day challenges.
It is a beautiful blessing to have to be forced into only being able to buy truly healthy preservative free foods for your child and family regardless of complications.
But sometimes, just sometimes, it would be nice to answer, "What do you want to do for supper" with a hearty "Let's go HERE" instead of 2 hours of pondering and pouring over menus, and occasionally ingredient lists when available, online still to turn up empty handed and still sitting at home.
I know that there is a purpose for our family to affect the greater good in all of this. I don't know how. I don't know when. I don't know where. But I dream of a world, or a US :), where everything is not controlled by the government/corn industry link and Duncan can grow up to have choices. To be a 'normal' teenage foody who gets to have choices that are easily available to him at a restaurant or at ONE grocery store instead of having to shop at 6 different stores that are all 30 minutes apart.
This weekend we are going to dive back into trying eggs baked into goods. I do not intend to start fulling baking with eggs again, I've learned how to use flax well enough at this point why even mess with eggs? They are allergenic and can cause serious illness when not disposed of properly. Yuck. But, we are doing this for a few reasons the primary of which being that there are a few additional pre-packaged frozen baked goods such as english muffins and breads by a few companies out there that Duncan could have if he could have egg. Considering the fact that I have yet to make a truly scrumptious loaf bread recipe here at home, having a better tasting bread source for Duncan would be nice. The bread he currently eats tastes like cardboard with an after-taste. I kid you not. He deserves better. It's a wonderful product for all of the kiddos and adults out there that need it. And, fortunately he doesn't know any different. But, as his mother, I want more for him. **So, wish us luck** This egg trying process is very long. First, he will receive long bake time baked goods for a week. If he does well for that week then he will progress slowly to short bake baked goods such as cookies for several days. Next would come pancakes/waffles for several days to a week and provided that that was sucessful we could take the plunge to something along the lines of scrambled egg. I have to admit that I am chicken to have him trying full egg. In fact, I'm afraid - period - to try the pancake stage again. But if, maybe if, the bread/muffin stage were successful then we could expand Duncan's food catalog and that would be fantastic!
*On a side note* - I have always LOATHED hearing people use the word 'retard' or 'retarded' as slang. It drives me batty. It's rude and inconsiderate. It wipes away the connection of personal struggle and day to day inescapable reality that people with special needs deal with on a daily basis as well as the mountains and hurdles that they've already climbed. While watching Glee just now, a show I don't normally watch, they just did a "be kind" commercial for not using the word "Retarded" as slang and in reference to someone whom might appear 'less intelligent' than you think is the norm. THANK GOODNESS! I'm SO happy that someone is finally speaking out for this issue! A world of acceptance, peace, love and understanding? How nice would that be?
"What do you want for dinner?"
"I dunno. What do you want to do for dinner?"
And so the story goes on, and on and on. We don't go out very often. Not only is it logistically complicated, but up here in NOVA it's expensive. What might cost you 15.00 back home up here at the same restaurant can cost almost double. We have been very blessed in that Ruby Tuesday's has been a safe food haven for us. Their chicken is not preserved in any way and is delivered fresh from a farm daily, at least in this area. The vegetables are totally fresh and the managers generally have bent over backwards to suit Duncan's accommodations. We also recently discovered that Duncan can eat at least at the local Cheeseburger in Paradise: Steak and steamed broccoli.
However, not every time that we want to eat out do we want Ruby Tuesday's or Cheeseburger in Paradise. Not every time that we want to eat out do we want to spend 30-35.00 plus tip. Not that we really do fast food, but there is no where to grab a quick snack (not even apple slices - they're all preserved with corn,) no fries for our little guy, not even a "Hey, let's go get a sandwich" - which gluten sensitive/celiac individuals have been dealing with for a long time. At least the typical gluten-only sensitive people can have some deli meat, some burgers -etc - at restaurants. Or, they can go somewhere like Uno's and get gluten-free pizza (It is A-MAZ-ING!) - but what about MFA kids?
There are hundreds, if not thousands, of other families out there in the same corn boat that we are in. I'm not down-playing gluten issues by any means or trying to make the indication that living gluten-free is easy...it's not. It's just "easier" than having multiple food allergies and one of them being corn.
On a daily basis when we sit in this NOVA traffic (think I-40 East Bound on a Friday after-noon in the summer NC people) and Duncan runs out of snacks , or drinks, or feels car sick and could use a carbonated drink/ginger ale - etc we're just in a mess. So, daily outings include packing a typically 'large' cooler for the day with snacks, fruits, raw veggies, beans for protein, rice crackers with individual organic PB packets (thank GOD, literally, that he's not allergic to peanuts!) LOTS of cups or back-ups such as bottled spring water (he can't have purified water - think Dasani and Aquafina = no go,) small size individually packed Tropicana OJ's or Rice Milk's (thank goodness there are at least 2 'box' drinks he can have) pressed fruit bars, cookies (though not the type of cookies that might pop into your head) paper towels and tissues and wipes (Duncan can't use standard TP, tissues, or paper towels or wipes - darn the corn again) - etc. The list could go on.
So, every day that we go out we lug usually two huge bags as well as our cooler, sometimes two coolers, out to the car. The first bag is our 'take-in' bag for where-ever we might go. The second bag I refer to as the "Oh Crap" bag. I don't say this in front of Duncan, mind you, but mentally that's what I refer to it as. It is usually fully stocked with an extra package of our Jackson Reece wipes, paper towels, 3 additional spare cloth diapers, at least 2 extra pairs of shorts, a pair of pants and at least 1 clean shirt. Since Duncan is not getting as car sick as he used to we don't "need" our sick bucket and clean-up kit, though they're still in the car. We carry our big cooler with tons of ice-packs and a spare small cooler, sometimes pre-packed, for carrying in to where we might go. Fortunately we are no longer having to carry his nebulizer and ALL of his meds each time we leave home. That was an additional cooler & small bag whenever we were having to do that. Now we just take epi-pens and compounded benadryl with us.
So anyway, back to the story of "what's for dinner." What is for dinner? Every mom and wife out there knows this is a frustrating question at times. In our case it's a daunting question that when we want to go out leads to either boredom (think Ruby Tuesday's for the 50th time) or just lack of new ideas due to limitations; so we stay home. That's exactly what we did tonight: Stayed home.
I fell asleep while putting Duncan down for his nap and woke up way too late to consider defrosting or cooking anything. Inevitably we did end up cooking at home. But, we hit the frustration wall. We wanted something new. Something adventurous. And, there was nothing; again. Sure, Dave and I could have had supper out and just taken something for Duncan. But, I did not want to do that Again. Yes, again.
That's our story day in and day out. Sometimes you just want a break from reality and fixing Duncan a meal here at home at 7:30 then driving somewhere to get something to eat, having to sit down, wait for food, and then drive home just did not seem appealing. On top of that some restaurants are beginning to be less understanding about us bringing food in now that he is old enough to eat off of the children's menu. As he gets older this will just increase.
Sure, there are laws protecting establishments from people bringing outside food in for the health and safety of people eating in the restaurant for contamination issues. However, what about people like us who NEED to bring outside food in for just that: health reasons? It's hard for some managers to believe that there is literally NOTHING in their establishment that fits Duncan's dietary needs. That is the story more often than not. I can not tell you how many LONG restaurant visits we've had (think 2 hours plus) where somewhat frantic and annoyed managers have gone back and forth to the kitchen for 30 minutes, plus, bringing us food labels because "THIS doesn't say CORN anything" only to be floored that the citric acid, potassium sorbate, Vitamin C, mixed tocopherols and SURPRISE - the salt contain corn. Then I have to explain how, and where they can find the information for themselves online.
Or, how many times we've had unknowing people tell Duncan in a restaurant, or grocery store, for that matter, "Tell your Mommy you want X - it's REALLY good!" and then that lead to a total meltdown because Duncan can't have X. The worst is when in a restaurant a waitress will suggest a "grilled cheese" to Duncan. Duncan L-O-V-E-S cheese. However, currently the only cheese he can safely consume is Vegan Gourmet cheese. That's it - and it's not that readily available at the average grocery store - much less available in a restaurant.
So, this is our situation. We want to take Duncan out. WE want to eat out for our sanity from time to time to break of the monotony of our little bubble. But, we're typically stuck. It's not really a complaint as much as it is a frustration. It's a frustration that we're grateful for in a lot of ways. Our child is not eating processed GMO chemical laden junk (and yes, that Juicy Juice that you think it healthy...it's not) - but being able to give him a 'normal' experience of getting to PICK food off of a menu, to take him out for ice cream or sorbet, to be able to let him even pick products in a store instead of "this one is the one that you can have" ~ these are our every day challenges.
It is a beautiful blessing to have to be forced into only being able to buy truly healthy preservative free foods for your child and family regardless of complications.
But sometimes, just sometimes, it would be nice to answer, "What do you want to do for supper" with a hearty "Let's go HERE" instead of 2 hours of pondering and pouring over menus, and occasionally ingredient lists when available, online still to turn up empty handed and still sitting at home.
I know that there is a purpose for our family to affect the greater good in all of this. I don't know how. I don't know when. I don't know where. But I dream of a world, or a US :), where everything is not controlled by the government/corn industry link and Duncan can grow up to have choices. To be a 'normal' teenage foody who gets to have choices that are easily available to him at a restaurant or at ONE grocery store instead of having to shop at 6 different stores that are all 30 minutes apart.
This weekend we are going to dive back into trying eggs baked into goods. I do not intend to start fulling baking with eggs again, I've learned how to use flax well enough at this point why even mess with eggs? They are allergenic and can cause serious illness when not disposed of properly. Yuck. But, we are doing this for a few reasons the primary of which being that there are a few additional pre-packaged frozen baked goods such as english muffins and breads by a few companies out there that Duncan could have if he could have egg. Considering the fact that I have yet to make a truly scrumptious loaf bread recipe here at home, having a better tasting bread source for Duncan would be nice. The bread he currently eats tastes like cardboard with an after-taste. I kid you not. He deserves better. It's a wonderful product for all of the kiddos and adults out there that need it. And, fortunately he doesn't know any different. But, as his mother, I want more for him. **So, wish us luck** This egg trying process is very long. First, he will receive long bake time baked goods for a week. If he does well for that week then he will progress slowly to short bake baked goods such as cookies for several days. Next would come pancakes/waffles for several days to a week and provided that that was sucessful we could take the plunge to something along the lines of scrambled egg. I have to admit that I am chicken to have him trying full egg. In fact, I'm afraid - period - to try the pancake stage again. But if, maybe if, the bread/muffin stage were successful then we could expand Duncan's food catalog and that would be fantastic!
*On a side note* - I have always LOATHED hearing people use the word 'retard' or 'retarded' as slang. It drives me batty. It's rude and inconsiderate. It wipes away the connection of personal struggle and day to day inescapable reality that people with special needs deal with on a daily basis as well as the mountains and hurdles that they've already climbed. While watching Glee just now, a show I don't normally watch, they just did a "be kind" commercial for not using the word "Retarded" as slang and in reference to someone whom might appear 'less intelligent' than you think is the norm. THANK GOODNESS! I'm SO happy that someone is finally speaking out for this issue! A world of acceptance, peace, love and understanding? How nice would that be?
Wednesday, July 13, 2011
Soap - Yes, Soap.
Soap. It's something simple. It's something we all use every day. Before Duncan was born I did the extreme couponer thing with baby lotions and soaps. I just had a natural knack for couponing. Maybe it was because my mom taught me how. Maybe it's because I used to think it was fun to do the stamp cards for my mom growing up. I'll explain: back home there is a grocery store that used to give out "bonus" stamps long before MVP card rewards. For the total dollar amount that you spent you got stamps in some denomination. Once you filled up this little bingo style board (just lots of squares) with stamps you could redeem them for basics like bread and milk etc. Since my Dad and Sister were heavy milk drinkers this was a great thing. (Now I'm the heavy milk drinker -who would have thought?) Doing the stamp cards was a fun chore, much better than dishes, so I was happy to do it any day!
I was so excited one day when I went to Babies R Us and managed to get sixish bottles of Huggies brand baby wash and lotions for somewhere around 3.00. It was a baby basic with a long shelf life and I now had alternates in scents. I bought a shea butter, a lavender, a cucumber melon - etc. YUM! My baby was going to smell great and be clean for a long time to come! Tight post baby budget : Take That : I was going to be prepared with basics.
Little did I know that those basics were going to become a major source of pain, literally, for our little guy. I never knew what all those chemical names and compounds meant on the ingredients' listings. All I knew was that if it didn't have peach, papaya, mango, almond and avocado I was good.
I could go in to an extremely lengthy post about all of the interesting experiences we've had with skin care/conditioning/skin med experiences we've had with Duncan, but that's for another day. The point of this post is SOAP.
So, when we were released from CNMC (Children's National Medical Center) with the starting working diagnosis of corn allergy we were given a lengthy, but not all encompassing, list of names that corn could hide under. Duncan's allergist, the head of allergy and immunology, had never had a corn allergic child before, much less one as allergic as Duncan. He didn't know what to do to help us, but offered up what research he could pull together.
On the drive home we were elated, exhausted, scared, worried, nervous. We were happy to be sleeping in our own bed (I had been sleeping in a chair and Dave on the floor most nights.) Duncan cumulatively had been in the hospital for a week. Five days at Children's. Dave had to fly in from Colorado and met us at Children's Monday night, our third night into hospitalization in total that time around. Duncan had been very sick for the month prior and was in the hospital just one month before. He was four months old and our roller coaster ride had hit a scary peak the Sunday night before. We almost lost him. He was essentially gone as my mother and father-in-law could vouche for.
So, being sent home with this long, but scant, list - no medication we could give him to ease his extreme pain from his completely raw bottom (he was bandaged by a burn specialist on his bottom - yes, it was that bad) no medication in case of anything...except an epi-pen...we were nervous to say the least. We stopped at Babies R' Us to get the best suited formula which was still scary as we later found out that he was allergic to dairy and tried to find some basics like soap. Though he wouldn't be able to be bathed for several weeks due to his skin-less bottom I had a motherly need to find some soap for him.
It was daunting.
There was NOTHING. The closest thing that I could find to somewhat reasonable and not completely corn-laden was Eucerin's Aquaphor Baby Shampoo and Body wash. Don't get me wrong, it still has tons of typically corn derived ingredients, but it was the lesser of all evils.
Once Duncan could be bathed again it seemed to do 'okay.' He did not have any major reactions to it, but the more I read about the horrible processing in these chemicals the more I felt horrible about using this soap -reaction or no reaction. And, I was constantly worried that the soap would cause a reaction or was bothering him internally. So, what did I do? Washed him super duper quickly!
Then, I found a wonderful soap by Dr. Bronner's that is truly natural, not 'all natural' which confuses the average consumer because it is a big misnomer most of the time. However, it was not tear-free and my hands started becoming very dry to the point of fingers splitting from it when used as many times a day as I needed to use it. It's a geat soap I just think I was reacting to the strong coconut base. My mom is anaphylactic to coconut and so far the apple hasn't fallen too far from the tree with allergies.
But, a couple of months ago I found two wonderful companies that produce soaps that Duncan can use. The first is Dakota Free and the second is Savionierre Soaps. Are the products expensive? Yes. What's not in our allergy friendly all-natural green little world?
~~ That is why we make other sacrifices to accomodate the best we can for the safe necessary products that our child requires to live. ~~
But, I found a tear-free shampoo that Duncan and I can share that is free of all of his allergens! WOOHOO!!!!! I am so excited!
SOAP!
It's such a basic. It's so basic most of us never even stop to think about which kind we are using or what the ingredients are. And I'm sure most people never even question the ingredients/chemicals that are in the soaps that they are lathering onto their skin, that is soaking into their skin and going directly into their blood streams. What are those words anyway? Why the soap smells the way that it smells? Why it lathers so much? Why there are 50 labeled ingredients on the back in teeny tiny writing that are hard to pronounce?
However, with a corn-allergic child all of these issues become prominent. Well, with a Gluten, Corn and Dairy free child these issues become extremely prominent because there are other soaps that could be used that are corn-free but contain wheat or milk. Although, these soaps are still far and few between and hard to come by.
So, a human basic: safe soap. It's in a box somewhere on it's way here to us.
****So excited****
Next time you use your soap, toothpaste, hair care product, shampoo etc. give a thought to what you're putting into your body and give thanks that you have options and potentially fairly cheap HEALTHY options. The cost of the soap might be a few more dollars right now, but save your health later. If you can spare those few dollars by not buying that coffee drink tomorrow or by not renting that movie for redbox that inevitably will sit around for 3 days before it gets watched...why not?
As for us, I'll say it again:
***SOOOOO Excited!******Personal Mommy Victory : Safe Soap for My Child******
(Now let's just hope it's really as safe & friendly as it seems *fingers crossed*)
I was so excited one day when I went to Babies R Us and managed to get sixish bottles of Huggies brand baby wash and lotions for somewhere around 3.00. It was a baby basic with a long shelf life and I now had alternates in scents. I bought a shea butter, a lavender, a cucumber melon - etc. YUM! My baby was going to smell great and be clean for a long time to come! Tight post baby budget : Take That : I was going to be prepared with basics.
Little did I know that those basics were going to become a major source of pain, literally, for our little guy. I never knew what all those chemical names and compounds meant on the ingredients' listings. All I knew was that if it didn't have peach, papaya, mango, almond and avocado I was good.
I could go in to an extremely lengthy post about all of the interesting experiences we've had with skin care/conditioning/skin med experiences we've had with Duncan, but that's for another day. The point of this post is SOAP.
So, when we were released from CNMC (Children's National Medical Center) with the starting working diagnosis of corn allergy we were given a lengthy, but not all encompassing, list of names that corn could hide under. Duncan's allergist, the head of allergy and immunology, had never had a corn allergic child before, much less one as allergic as Duncan. He didn't know what to do to help us, but offered up what research he could pull together.
On the drive home we were elated, exhausted, scared, worried, nervous. We were happy to be sleeping in our own bed (I had been sleeping in a chair and Dave on the floor most nights.) Duncan cumulatively had been in the hospital for a week. Five days at Children's. Dave had to fly in from Colorado and met us at Children's Monday night, our third night into hospitalization in total that time around. Duncan had been very sick for the month prior and was in the hospital just one month before. He was four months old and our roller coaster ride had hit a scary peak the Sunday night before. We almost lost him. He was essentially gone as my mother and father-in-law could vouche for.
So, being sent home with this long, but scant, list - no medication we could give him to ease his extreme pain from his completely raw bottom (he was bandaged by a burn specialist on his bottom - yes, it was that bad) no medication in case of anything...except an epi-pen...we were nervous to say the least. We stopped at Babies R' Us to get the best suited formula which was still scary as we later found out that he was allergic to dairy and tried to find some basics like soap. Though he wouldn't be able to be bathed for several weeks due to his skin-less bottom I had a motherly need to find some soap for him.
It was daunting.
There was NOTHING. The closest thing that I could find to somewhat reasonable and not completely corn-laden was Eucerin's Aquaphor Baby Shampoo and Body wash. Don't get me wrong, it still has tons of typically corn derived ingredients, but it was the lesser of all evils.
Once Duncan could be bathed again it seemed to do 'okay.' He did not have any major reactions to it, but the more I read about the horrible processing in these chemicals the more I felt horrible about using this soap -reaction or no reaction. And, I was constantly worried that the soap would cause a reaction or was bothering him internally. So, what did I do? Washed him super duper quickly!
Then, I found a wonderful soap by Dr. Bronner's that is truly natural, not 'all natural' which confuses the average consumer because it is a big misnomer most of the time. However, it was not tear-free and my hands started becoming very dry to the point of fingers splitting from it when used as many times a day as I needed to use it. It's a geat soap I just think I was reacting to the strong coconut base. My mom is anaphylactic to coconut and so far the apple hasn't fallen too far from the tree with allergies.
But, a couple of months ago I found two wonderful companies that produce soaps that Duncan can use. The first is Dakota Free and the second is Savionierre Soaps. Are the products expensive? Yes. What's not in our allergy friendly all-natural green little world?
~~ That is why we make other sacrifices to accomodate the best we can for the safe necessary products that our child requires to live. ~~
But, I found a tear-free shampoo that Duncan and I can share that is free of all of his allergens! WOOHOO!!!!! I am so excited!
SOAP!
It's such a basic. It's so basic most of us never even stop to think about which kind we are using or what the ingredients are. And I'm sure most people never even question the ingredients/chemicals that are in the soaps that they are lathering onto their skin, that is soaking into their skin and going directly into their blood streams. What are those words anyway? Why the soap smells the way that it smells? Why it lathers so much? Why there are 50 labeled ingredients on the back in teeny tiny writing that are hard to pronounce?
However, with a corn-allergic child all of these issues become prominent. Well, with a Gluten, Corn and Dairy free child these issues become extremely prominent because there are other soaps that could be used that are corn-free but contain wheat or milk. Although, these soaps are still far and few between and hard to come by.
So, a human basic: safe soap. It's in a box somewhere on it's way here to us.
****So excited****
Next time you use your soap, toothpaste, hair care product, shampoo etc. give a thought to what you're putting into your body and give thanks that you have options and potentially fairly cheap HEALTHY options. The cost of the soap might be a few more dollars right now, but save your health later. If you can spare those few dollars by not buying that coffee drink tomorrow or by not renting that movie for redbox that inevitably will sit around for 3 days before it gets watched...why not?
As for us, I'll say it again:
***SOOOOO Excited!******Personal Mommy Victory : Safe Soap for My Child******
(Now let's just hope it's really as safe & friendly as it seems *fingers crossed*)
New Recipes - New Inspiration
So, we've taken a bit of a break. A break from blogging, a break from communication to some extent - Sorry Mom :) - and a break from some stressors. We've had a lot of change in the past month and a half. I am continuing to heal from surgery. YAY me! Dave has been home for a few weeks now and will be home for another week. YAY US! We've done lots of family activities. We took Duncan to his first movie in a movie theatre (VERY scary when your child has a severe corn allergy,) we've gone to a local waterpark/kiddie pool several times and in fact got season passes (it was pretty 'cheap' since it was through parks and rec,) we've gone to the farmer's market some more, made preserves,we've watched movies at home, worked on our garden, made home-made play-doh, gone on walks in the evenings and just over-all enjoyed life. It's so NICE and AMAZING to be together as a family again.
We've had some not so great changes as well. Such as Duncan only having one therapy day left until December 31st. And, the best part? Dave's company won't approve for Duncan to have more days because giving Duncan the treatment that he needs for his neurological dysfunction is considered "special treatment." And thus, they feel that Duncan does not deserve special treatment according to Dave's company. So, we are placing this in God's hands. Everything is going to work out, and hopefully to Duncan's benefit. We're still pursuing what we can behind the scenes - but ultimately this is just one of those transitions in life that we're having to cope with and improve ourselves so that we can better serve our son. We conquered a lot of his medical problems due to our own research and ingenuity - why should this be any different?
What do I do when I'm stressed? Anyone that's lived with me or really knows my nuances knows that I bake. When I'm stressed I am an obsessive baker. It takes me back to my childhood and spending time with my Grandma. I think I can speak for all of us Smith grandkids when I say that our Poppy and Grandma's house is one of the most wonderful places in the world. They love unconditionally, welcome everyone in, always let you have special treats and Poppy would always cook you whatever you wanted for supper. :) When I'm a grandparent I hope I'm the kind of grandparent that they've always been to us.
So, because we've had extra stressors lately Duncan has been the beneficiary. He has had Chickpea Flour Bread Rounds, Carob Cake with Strawberries and Pineapple inside (you can't taste the fruit - it acts as a 'fluffer and moisturizer,' homemade oatmeal bites, oatmeal and dried berry granola bars (i'm not a fan of oatmeal cookies but these bars were wonderful! I got the springboard from another blog,) dry coffee-style brownies, pizzas and more things that I'm sure I'm leaving off. He's also had fresh strawberry-orange juice which our juicer turned into a sorbet like consistency. He drank it all so quickly we couldn't even keep any for later!
Allergy friendly, at least Duncan friendly, baking is super difficult. Usually gluten-free baking consists of a lot of corn-based ingredients. Grain free baking usually consists of a lot of eggs. Breads usually rely on yeast, vinegar, buttermilk or eggs. The list could go on. I'm sure you get the picture. So, I'll leave you with this question to ponder:
How would you make a cake if I told you you can't use:
Standard sugar, brown sugar or powdered sugar
Eggs
Wheat Flour
Corn Starch
Standard Baking Powder
Standard Jams and Jellies
"Regular" Juice
Milk
Cream Cheese
Buttermilk
Vinegar
Standard Pudding
Yogurt
Gelatin
How would you do it?
It has taken me nearly two years to answer that question. Due to my Grandma's wonderful assistance I turned into a great baker. But, all of that was wiped away nearly two years ago. All that remained was the desire. The necessity.
Nearly two calendar years later after lots of research, lots of trial and error, lots of patiently waiting for ingredients to fit into our budget, lots of anxiously waiting for ingredients to arrival in the mail, lots of trial and error, lots of ingredients and experiments thrown in the trash I have that answer!
Success is sweet; and in this case it literally is!
Ash
We've had some not so great changes as well. Such as Duncan only having one therapy day left until December 31st. And, the best part? Dave's company won't approve for Duncan to have more days because giving Duncan the treatment that he needs for his neurological dysfunction is considered "special treatment." And thus, they feel that Duncan does not deserve special treatment according to Dave's company. So, we are placing this in God's hands. Everything is going to work out, and hopefully to Duncan's benefit. We're still pursuing what we can behind the scenes - but ultimately this is just one of those transitions in life that we're having to cope with and improve ourselves so that we can better serve our son. We conquered a lot of his medical problems due to our own research and ingenuity - why should this be any different?
What do I do when I'm stressed? Anyone that's lived with me or really knows my nuances knows that I bake. When I'm stressed I am an obsessive baker. It takes me back to my childhood and spending time with my Grandma. I think I can speak for all of us Smith grandkids when I say that our Poppy and Grandma's house is one of the most wonderful places in the world. They love unconditionally, welcome everyone in, always let you have special treats and Poppy would always cook you whatever you wanted for supper. :) When I'm a grandparent I hope I'm the kind of grandparent that they've always been to us.
So, because we've had extra stressors lately Duncan has been the beneficiary. He has had Chickpea Flour Bread Rounds, Carob Cake with Strawberries and Pineapple inside (you can't taste the fruit - it acts as a 'fluffer and moisturizer,' homemade oatmeal bites, oatmeal and dried berry granola bars (i'm not a fan of oatmeal cookies but these bars were wonderful! I got the springboard from another blog,) dry coffee-style brownies, pizzas and more things that I'm sure I'm leaving off. He's also had fresh strawberry-orange juice which our juicer turned into a sorbet like consistency. He drank it all so quickly we couldn't even keep any for later!
Allergy friendly, at least Duncan friendly, baking is super difficult. Usually gluten-free baking consists of a lot of corn-based ingredients. Grain free baking usually consists of a lot of eggs. Breads usually rely on yeast, vinegar, buttermilk or eggs. The list could go on. I'm sure you get the picture. So, I'll leave you with this question to ponder:
How would you make a cake if I told you you can't use:
Standard sugar, brown sugar or powdered sugar
Eggs
Wheat Flour
Corn Starch
Standard Baking Powder
Standard Jams and Jellies
"Regular" Juice
Milk
Cream Cheese
Buttermilk
Vinegar
Standard Pudding
Yogurt
Gelatin
How would you do it?
It has taken me nearly two years to answer that question. Due to my Grandma's wonderful assistance I turned into a great baker. But, all of that was wiped away nearly two years ago. All that remained was the desire. The necessity.
Nearly two calendar years later after lots of research, lots of trial and error, lots of patiently waiting for ingredients to fit into our budget, lots of anxiously waiting for ingredients to arrival in the mail, lots of trial and error, lots of ingredients and experiments thrown in the trash I have that answer!
Success is sweet; and in this case it literally is!
Ash
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