LIVING

With EoE, Allergies, Asthma and a G-Tube

Savory, but not saveable

I got excited when I found a cracker recipe for Gage. I found it on whole living daily. A site i’ve recently come across and have found a number of recipes I can use. The crackers are called Addictive, Savory Allergy Free (GFCF) Cheddar Crackers. I would love to feed Gage a flavored snack cracker rather then his cardboard rye crackers. Which, he loves, but he’s 3 and deserves yummy snack crackers like every other kid.
Let’s get started.
Makes 2 dozen 1 ½-inch crackers

1/2 cup + 2 Tablespoons Authentic Foods GF Classical Blend or my Basic Gluten-Free Flour Mix – I used Bob’s Red Mill baking flour mix
2 Tablespoons sorghum flour
2 Tablespoons golden flaxseed meal
¼ teaspoon xanthan gum
¼ teaspoon baking soda
¼ teaspoon salt
Pinch cayenne pepper
1/8 teaspoon garlic powder
1/8 teaspoon onion powder
¼ cup + 1 Tablespoon dairy-free, soy-free vegetable shortening – I used crisco
1 ½ teaspoons light agave nectar
1 Tablespoon + 1 teaspoon rice milk – I used regular milk
¼ cup Daiya “Cheddar” Cheese – I used regular cheese

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Pre-heat the oven to 325 and line a cookie sheet with parchment paper.

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Whisk flour mix, sorghum flour, flaxseed meal, xanthan gum, baking soda, salt, and spices. I used Bob’s Red mill baking mix for my flour mixture. I do NOT advise this and I’ll tell you why in a minute.

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She had written the recipe so that you cream the vegetable  shortening and agave nectar then add it to the flour mixture. I read it wrong and dumped it right into the flour. Still came out the same. I was also suppose to use a stand mixer with a paddle. I don’t have either. I would LOVE a stand mixer. I would also love a dehydrator, new large food processor and bread maker. Shoot, let’s go ahead and throw in a new camera while i’m at it.

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Roll the dough into a ball with your hands. Then smash the ball on a piece of parchment paper into a disc. Then place another sheet of parchment paper on top and roll the dough with a rolling pin until it’s an 1/8″ thick.

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Once the dough is rolled start cutting the circles. They should be between 1-1/2″ and 2″ big. I ended up using the cap from a spice jar. Move the circles to the cookie sheet with parchment paper on it. Jab each circle with a fork 3 times.

imagePop them in the oven and bake for about 18 minutes until you can smell them and they’re golden brown. When you remove them let them sit on the cookie sheet for 5 minutes before moving them to a cooling rack.

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Once they’ve cooled find your taste tester.
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My tester loved them and went for more.
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However, as he chewed he changed his mind.

So I grabbed a cracker and tried it. At first they did taste good. Then as you chew you get the real flavor, beans. I shouldn’t have used the Bob’s Red Mill flour mix for these. They were gross, so we ended up feeding them to the birds. I am going to attempt them again, but with millet instead. The original recipe calls for a rice flour mixture but Gage can’t have rice.

I’ll get this recipe figured out!

April 30, 2012 Posted by | Gage's allergies, LIVING | , , , , , | Leave a comment

Millet time

I’ve had a bag of millet grain for quite some time. I have never cooked with it and really didn’t know what to do with it, until now. A friend recently posted a quinoa oatmeal type recipe and I gave it a go with millet. It was supposed to be like a breakfast oatmeal. Gage use to love oatmeal. Charlie eats Quaker oats now and Gage drools as he watches him eat it. I hate that.

This morning, things were going to change. Gage was going to get his oatmeal.

I pulled out the millet and measured 1/4 cup.

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I poured it in a pot and added 1/4 cup water and 1/4 cup milk.

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I brought that to a boil.

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I then reduced the heat to medium low and put a lid on it. I cooked it until all the liquid was absorbed.
Once it was done I made 3 small piles on a plate. image
I wanted to make sure it tasted yummy how Gage wanted it to taste. One pile we added cinnamon and sugar, the 2nd pile honey and the 3rd maple syrup. He decided he loved the maple syrup with a little bit of cinnamon and sugar in it. That’s a lot of sugar but millet is super healthy so i figured it would balance out.

Gage loved his oatmeal. He asked if I had more for him to make the next day. I assured him we had a whole bag.
Every funky food made that Gage loves is a small victory. I felt so happy I found something he thought was oatmeal like.
Later I caught him in the kitchen sneaking millet straight from the bag. I asked him what he was doing. He replied “eating my oatmeal”.
I thanked my friend today for posting the quinoa recipe. I did not follow the recipe at all but it got my brain thinking of other millet dishes I can make for Gage.

April 27, 2012 Posted by | Gage's allergies, LIVING | , , , , , , | 1 Comment

Breathing

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Here we go with another round of colds. Tinleigh has a very gunky cough and I am fearful she’ll get rsv again.
Gage and I cheered this morning when she held her own breathing treatment.
Not sure we should actually be cheering.
I guess it’s the norm in our house to do breathing treatments, so she may as well learn now!
Gage and Tinleigh are headed to the doctor this afternoon before the weekend starts. I hate when they get sick as the weekend begins. MOM TIP: I like to do the doctor’s latest appointment on Fridays. They sometimes get worse, especially when it has to do with breathing, as the day goes on so wait until the end of the day if you can. Gage has the same gunky cough Tinleigh has. Gage has had 3 rounds of walking pneumonia since February and I dread when he starts coughing now. So we’ll get the doctors opinion on things this afternoon and see what might be in store. Hopefully we can nip this in the bud before it gets worse!

April 27, 2012 Posted by | LIVING | Leave a comment

The Emotions of a Mom

Being honest, I’m having a hard time with my emotions lately. I feel very sad for my boys. I hate reading articles about other kids having anaphylactic reactions. Reading about kids having to get feeding tubes breaks my heart. I am scared for my boys that it IS a possibility for either of those two things to happen to them.

I always try to have a positive outlook about things for them. Maybe I do it for myself.

Going to the grocery store has been really hard lately. Making weekly menus is even harder. I just want to feed them everything and help them grow.

I don’t want to feel nervous everyday when I kiss them goodbye as they head into school. Knowing summer is almost here and I’ll be with them everyday is a little bit of a relief. I have big plans for this summer!  
I came across an article from imom about a mom with a child with special needs and the emotions we have. Although I don’t have kids with mental or physical special needs, food allergies and eosinophilic diseases require a lot of special attention and needs.

iMOM
Encouragement Special Needs: 3 Emotions it’s Okay for Moms to Feel
Having a special needs child adds another layer of complexity to the job of being a mom. And, often, these mothers expect so much of themselves thereby adding even more pressure to their lives.
Here are 3 emotions it is okay for moms of special needs children to feel:

1. It’s okay to feel tired. Motherhood can be exhausting; motherhood with a special needs child is doubly so. Children with physical needs require more physical output from you, whether it’s helping them with mobility and giving them extra physical care, or driving them to medical and therapy appointments. Children with mental and emotional challenges can drain your mental and emotional reserves as well. So, allow yourself to be tired. Even if you feel like you don’t have the time cushion to do that, taking care of yourself will benefit you and your child.

2. It’s okay to feel discouraged. Parenting a special needs child compared to parenting a non-special needs child is like comparing a ride on the scariest roller coaster ever built with a kiddie roller coaster. They both have ups and downs, but beyond that, there’s no comparison.  You’re dealing with things other moms aren’t—fighting insurance companies, trying to help your child fit in with his peers, and processing the stops and starts of your child’s progress. When you do feel low, which is okay, the key is having a plan to get back up again. Have at least one person you can call in a pinch. Reach out, no matter how difficult it is.

3. It’s okay to feel sad. As you watch your child struggle, it’s only natural that you will feel sad. You might feel sad for what she can’t do, or for what her special need causes her to miss. You might also feel angry that this would happen to your child.
I once heard a mother of a special needs baby say, as she waited for him to get out of surgery, “You know, I would understand if this had happened to me, but why would God let it happen to an innocent baby?”

Facing your child’s special need every day can be heartbreaking. But, the same mother who said those words above, has now, 13 years later, channeled that sadness into admiration for her son who has come so far in spite of his physical challenge.  Yes, she still feels sad and angry, and, yes, she would take away his physical challenge if she could, but she knows that she can best help him by moving beyond the sadness and anger as much as she can.
© 2011 iMOM. All Rights Reserved. Family First, All Pro Dad, iMOM, and Family Minute with Mark Merrill are registered trademarks

I am very tired. By the time the kids bedtime rolls around if I sit down I’m done. If the dishes didn’t get done, then I get up a little earlier and do them. If the laundry didn’t get folded or put away, it waits. I’ve come to the realization that I need to rest myself because my kids need me at my best every day.

I feel very discouraged. I think that’s a huge feeling a lot of eosinophilic moms feel. No one can tell us what is causing our child to flare up. It’s all a guessing game. Our kids could feel great one week then horrible the next and we may have no idea why. It’s very discouraging not being able to fix your baby. Your child may be able to eat all but 10 foods one month and have 10 more taken away after a scope. You never know when they’re going to get better or worse.

I do feel sad. I feel sad when they can’t eat the fun treats their classmates and friends are having. I feel sad that I don’t want to take them to the movies because Gage loves popcorn but can’t have it. I feel sad when they joke with each other about not being able to eat certain foods. This list could go on for pages.

The whole point of my blog is to let everyone know you can still LIVE life to the fullest with food allergies, asthma and an Eosinophilic disease. Behind all the words though, I am a frustrated, scared, sad, discouraged and a tired mommy. It’s okay to have many emotions about what you’re dealing with, it’s just part of the journey on the road of being a mom. It’s part of our life.

April 19, 2012 Posted by | LIVING | 4 Comments

No bake cookies

When I was in high school I remember so vividly my brother would make up a batch of no-bake cookies, give me one and then eat the entire batch himself. I loved no bake cookies. Nathan loves them too and asked for some recently.

I immediately pulled out the recipe card and was excited because Charlie can eat oatmeal and loves chocolate. I knew they would be a hit with him too!

First step: Occupy baby

After baby is set get out everything you need:

1 cup sugar

3T cocoa

1/4 cup milk

1/4 cup margarine

1/8 tsp salt

Cook on high till rolling boil, then cook 1 minute longer. Remove from heat.

Here’s where I made it allergy friendly for us.

1/4 cup SUNBUTTER

1-1/4 cup oatmeal (puffed millet)

1/2 tsp vanilla

You’re suppose to mix the remaining ingredients in once you remove it from the heat. At this point I added the Sunbutter and vanilla and mixed. Then I separated the mixture in half into two bowls. One bowl I added a little over a 1/2 cup of oatmeal and the other bowl I added puffed millet.

You then drop by spoonful onto wax paper and refrigerate until firm. They turned out great. The Sunbutter does change the flavor a little bit. Next time I won’t use quite as much Sunbutter, the flavor is strong in these cookies.

Gage thought his millet version was awesome!

Didn’t get a picture of Charlie eating his but he ate two right away!

April 18, 2012 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , | Leave a comment

Feeding Tube Bride

What has this world come to. Oh the numerous ways to lose weight.

What ever happened to good old-fashioned exercise and eating in moderation?

In this fast paced world of I want it right now, that’s what dieting has turned to. I’m not talking about liposuction. People are actually using feeding tubes to lose weight.

When my husband first brought this article to my attention I immediately became furious. One of the many scary things about an Eosinophilic disease is that you can at any point end up on a feeding tube. Take a minute to think about putting a feeding tube in your child. Doesn’t matter if they’re 2 years old or 14 years old, with an eosinophilic disease it could happen at any age. Now, how hard do you think it would be to eat a meal in front of your child? What about every day activities? How about telling them they can’t eat anything for the next 6 months. Not something you want to think about is it?

Please read about real kids with feeding tubes.

Feeding tubes.

Now, here is the article about brides using feeding tubes.

Brides.

Please tell me why people are doing this? It’s sick.

I hope the women and men using this method of diet are made aware of others needing feeding tubes for real purposes. I hope they watch the CURED video.

Just use you’re head.

If you eat too much you’re going to be fat.

If you don’t exercise to keep your body healthy it’s not going to be healthy.

Eat in moderation and go for a walk!

April 17, 2012 Posted by | LIVING | , , , , , , , | Leave a comment

Anaphylactic attack at school

To continue on my friends blog post yesterday My hard truth I want to share a true story about just how scary and serious an anaphylactic attack can be.

I can not imagine one of my boys going through this, but every time they go to school, a social food event, or are around other people and food in general they are subject to it happening.

I am so thankful Gage only touched peanut butter that day in his class.

Both of my boys have asthma just as Max does in this story.

This article comes from Protect Allergic Kids (PAK)

7-year-old Boy Survives Peanut Allergic Reaction
A mother’s story.  OMAHA, Neb. — Carter Lake, Iowa

  It was Tuesday, right before Christmas.  My son is in first grade.   They
were having a movie/treat day at school.  I was up at the school around
9 o’clock that morning and the teacher showed me two treats they were
having for the class — popcorn and marshmallows — I okayed those treats.
I went home and I got a phone call at about noon.  His teacher said Max had
taken a bite of a peanut butter granola bar.  So I told her to get him to the
nurse immediately.  They put Max on the phone with me and I asked him if he was breathing okay.  He said yes and was able to talk fine.  The nurse gave him Benadryl (antihistamine) and checked his oxygen level which was at 97.

  I drove to the school immediately.  I got him in the car and he burst out in tears that his tummy hurts really badly.  I took him to the emergency room at Children’s Hospital where we were in triage 30 to 45 minutes with no treatment. Then the hives started creeping up on the back of his neck and his face.  The asthma symptoms kicked in hard and fast, wheezing and coughing.  Max has asthma so when he has a food allergic reaction, respiratory distress is triggered.  The ER crew gave him two shots of epinephrine and three vials of prednisone along with a string of breathing treatments.  Nothing was helping the symptoms at all.

  At that point, the doctors decided to intubate him.  They had to sedate him so they took us to the room next door.  He started to vomit.  They were afraid to aspirate his lungs but he was okay.   His heart rate dropped when they put the tube down his throat.  They performed CPR on him for about a minute and found a pulse.  They rushed him to ICU.  He was bagged.  Someone was squeezing the bag to breathe for him.

  The doctor came out and said he wasn’t doing well in there.  Our only option was to put Max on life support because his lungs had shut down.  The doctor said his survival rate was low enough to put him on a machine called the ECMO (ExtraCorporeal Membrane Oxygenation).  The doctor said if it was his son, they would do that for him.  They had to cut into his jugular veins and put two catheters down into there.  One catheter pumped out the blood with the CO2 in it and went into a machine, cleaned it out and put oxygen in.  And the other catheter pumped the clean blood back in. He was on that machine from Tuesday night until Wednesday morning.  During that process the peanut was finally out of his system.  Max’s case was the first time that ECMO had been used to save a child from a food allergy reaction at this particular hospital.   On Wednesday morning, they were able to take him off the machine.  He was on the ventilator until Wednesday evening.  Max was moved out of the PICU and into a regular room on Thurs. morning.  Thursday evening, we got to go home.

  After that he didn’t talk for two days.  I thought he was emotionally damaged because he was very sad and quiet.  He still withdraws around groups of people.  When he was in ICU with the tube down his throat, we were asking him questions and he was asking about his sister .  On Christmas day, he went into a shell around family and stuck to himself.  Even now, he gets quiet around groups of people.

  Max’s allergist told us Max said “I am going to die” in the ER.  He had that impending sense of doom.

How did this happen?
  His teacher said a little girl brought in a variety pack of granola bars (including peanut butter) and handed it out to all the kids when the teacher was not looking.   Max said he showed his teacher the plate and asked if it was safe to eat and she said yes.  I still don’t understand why this food was sent into the class in the first place and how it landed on his plate without the teacher knowing.   He always has his own snack bag at school.  His epi-pen stays in the nurse’s office at this time.  The nurse did not call 911 because he did not have breathing issues.

Next steps
  Max has a 504 meeting coming up at his school to protect his civil rights.  They had a FAAP (Food Allergy Action Plan) in place at the beginning of the year.  Class parents were notified about food allergies at the beginning of the year and after this incident a reminder letter went out by the principal.  There is now a peanut free classroom poster outside the classroom door.  I hope to remove food from the classroom for birthdays and learning activities.  Because of this incident, the Emergency Room at Children’s Hospital is changing protocols on treatment for food allergic reactions.  The nurse recently read a food allergy storybook to the kids and told them about FAAN‘s Be a PAL program.

Max attends a primary school which includes Pre-K, Kindergarten and 1st grade.   His mother hopes to share her experience with others to prevent this from ever happening to another food allergic child.       

April 12, 2012 Posted by | Charlie's allergies, Gage's allergies, Helpful sites, LIVING | , , , , , , | Leave a comment

My Hard Truth

A friend wrote this today.

It’s bold and very much the truth.

A truth you wouldn’t know if you don’t have food allergies.

People with kids who don’t have food allergies may think it’s pretty easy to avoid a food if you’re allergic.

There is a lot more to it than that.

This blog entry lays it all out on the table.

My Hard Truth.

April 11, 2012 Posted by | LIVING | Leave a comment

Lunch

School is coming to an end and new creative lunches are getting harder to come up with.

Here are a few days worth of lunches I pack for Charlie.

Who’s got some ideas I can use?

Tortilla warmed then wrapped around a stick of cheese, cherries, Fruit Gushers, Pringles and a juice.

Sliced up pancake, cool whip for dipping, kiwi, pudding, cheese stick and juice.

Turkey and cheese sandwich, coconut marshmallows, Fruit Gushers, frozen Go-gurt and juice.

Cheese sandwich, Pringles, frozen Go-gurt, black olives and juice.

It’s actually cheaper for him to drink a juice box rather than buying milk! He does on occasion get to buy a milk, which he thinks is super cool. He’s not a huge fruit eater and won’t drink juice at home so this is usually the only way for me to get some in him.

So what are some things you pack? All ideas welcome!

April 11, 2012 Posted by | Charlie's allergies, daily life, LIVING | , , , , , , , , , , , , | Leave a comment

Birthday Parties

Since starting school this year Charlie has been invited to a few birthday parties. We’ve gone to each one prepared with his own dessert. The last one he was invited to was at the bowling alley. I figured why not make it a family event. Gage and Tinleigh have gone to the other parties with us anyways. Daddy could go this time and bowl with Gage on a different lane. So we pack it up Saturday afternoon and headed out. The bowling alley in our town just happens to be the one on campus. We’re pretty small town and it’s the only bowling alley around.

                                                       Awww college, I miss those days. I never realized how easy it really was. I think we all learned that lesson, right?
We’ve never gone bowling before. Although, Charlie insists he’s awesome at it because they’ve done it in gym class. I assured him setting up pins in they gym is not comparable to real bowling. He still insists he’s the best ever.
This would be Tinleigh’s first time bowling as well.

She weighs as much as the ball.
We get shoes for Nathan and the boys. I take Charlie over to his friends as Nathan and Gage get set up on their lane. I think there were only 14 lanes so it’s not like the place was huge. The party mom put Charlie on a lane, he could hardly wait his turn. When it was finally his turn I quickly realized the kid had no clue how to handle the ball. I attempted to show him. He’s stubborn like his daddy though and told me over and over he knew what he was doing. So I let him try it his way. They did have the bumpers up.
I went back and forth the whole time snapping pictures and cheering them on. It did cross my mind that the balls were dirty and I was a little nervous about what germs we might catch. Turns out that’s where Gage picked up his cold that turned into pneumonia, yes he had it twice.
As an allergy mom do you wipe down the balls in fear of food contact?

April 9, 2012 Posted by | daily life, LIVING | , , , , , | 1 Comment

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