LIVING

With EoE, Allergies, Asthma and a G-Tube

Hello sick season

We’re starting cold and flu season off right. Monday Gage stayed home with a fever and wheezing. Today Charlie was swabbed for strep and his asthma is acting up. 

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Tinleigh has been wheezing for 2 days now. She’s having a hard time catching her breath so she got an appointment with the doctor as well.

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Poor Layton is sneezing out giant snot balls. That’s one part about being a mom that grosses me out. Snot,  boogers and puke, count me out.

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Luckily Charlie’s rapid strep came back negative. We’ll know for sure in 2 days when the culture comes back. It’s happened twice with Charlie that the culture comes back positive. Tinleigh is getting a round of steroids. Anyone want to keep her for the week? Tinleigh on steroids is not fun. She’ll get better quicker though, so I can’t complain.
Should be an interesting winter. The school nurse told me yesterday kids are already getting the flu. Like Charlie said as we were leaving the office, we’ll just tough it out.

October 29, 2014 Posted by | LIVING | Leave a comment

Enjoying life

Since moving we’ve had our shuffle of doctor appointments, transferring of files, many forms to fill out and documents to sign, allergy and asthma attacks, even a couple rounds of the sniffles. Aside from all the usual business we are trying to make it a priority to enjoy our new surroundings. It is beautiful here and we love it.

wpid-2014-09-01-13.15.48.jpg.jpegIt’s hard to take all the kids out at once because there’s such a range in age, but we’re getting the boys out to enjoy nature as much as possible.

wpid-20141019_170502.jpeg wpid-20141018_143356.jpg wpid-20141019_165950.jpeg wpid-20141018_142859.jpg wpid-20141005_150939.jpg wpid-20141018_141848.jpg wpid-20141003_132613.jpg wpid-20141018_142615.jpgNow the leaves have started to change. The mountains full of trees are almost more gorgeous than usual. I can’t wait for full blown fall.

wpid-wp-1414080283437.jpgThe views here are just enough to take my mind off of the daily struggles we face. Although i haven’t joined a mom group or really met anyone, I’m enjoying our new state!! I think the kids truly are as well.

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October 23, 2014 Posted by | LIVING | Leave a comment

Teal pumpkin project

If you are my friend, or read my blog, you know what we go through in my house. I have read article after article from people against the teal pumpkin project.
How its going to eventually ruin Halloween.
Why should America bend this way or that for these kids with allergies when its up to their parents to help teach them to deal with it.
Many of the kids with allergies are not actually diagnosed with allergies.
My blood boils.
I have never felt such anger.
All the teal project asks is that you have a bowl of kazoos or stickers for kids with food allergies since they probably can’t eat the candy you have bought. Let everyone know you have a special allergy bowl by placing a teal pumpkin on your porch.
That’s it.
Simple.
If you don’t want to do it, don’t. I won’t judge you either way. My kids will love you to pieces if you do it though. Quit making an already crappy night for kids with food allergies worse. Let them have fun. Let them run house to house with their friends and not worry that a peanut candy slips in their bag. Do you know how much I would love to have my kids run around collecting candy all evening and not once ask “mom, is this safe?” Or “here mom, I know I cant eat this.”. It kills me. Then to get home,  dump the loot and sort it out leaving them with maybe 10% of what they collected.
IT SUCKS
Just like corned beef and cabbage on New Years Day
Valentines day candy
Easter egg hunting and Easter candy
Birthday parties at school
Summer festivals with booth after booth of delicious foods
Forth of July picnics
Having your own birthday when you can’t eat cake
Thanksgiving dinner
Christmas dinner
All the play dates, sleep overs, family gatherings and every other event these kids attend where food is present and they are reminded they are not normal. Places where they face food that if accidentally consumed could possibly end their life.
Why not let them have fun on Halloween just like your kid? You don’t want to buy some glow sticks and paint a pumpkin teal? Fine. Don’t.  Keep your negativity to yourself though.
I will never forget our first Halloween with diagnosed allergies. It was sad once we separate out the safe candy. There wasn’t much left. This year i have two kids with feeding tubes and we live in a new neighborhood.  I doubt every porch, if any, will have a teal pumpkin.  It makes me sad to think about it. So Nathan and I decided we will sort out the candy when we get home. Once that is done we will let the kids trade in all the candy for a small toy. Just something to make them feel a little better. We will then mail all our candy to my cousin serving the U.S.A. overseas. I feel its a win win.
I am not one to voice my opinion like this. I just couldn’t keep quiet any longer. As an allergy mom, I can proudly say I have worked my tail off teaching my kids about the dangers they face.  All while trying to make them feel “normal” at every food event we attend. I think it would be great if neighborhoods and communities could help these kids feel “normal” on a food holiday. Is it their job? No, but I bet June Cleaver would have a teal pumpkin on her porch.

October 20, 2014 Posted by | LIVING | 7 Comments

Happy Birthday Tinleigh

Tinleigh turned three today!!

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Thank you Cherrybrook farms for making a “safe” cake mix for Tinleigh.

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She just learned there’s paper towels as i snapped the picture.

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Rolling them back up.

October 4, 2014 Posted by | LIVING | 3 Comments

What’s scary about Halloween?

Hey EoE! You make Halloween yet another scary food holiday for my kids.

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Looking down the candy aisle makes every EoE mom feel a huge range of emotions I’m certain. I haven’t yet decided how we’ll handle trick or treat this year. Will we trade in candy for a toy? We could also trade in candy for safe candy I have purchased. I dont feel I know the neighbors well enough yet to introduce them to our world of allergies. I still have time to figure it out.
I hate candy aisles.

September 26, 2014 Posted by | LIVING | Leave a comment

Pears

Layton has a thing about trialing food.

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I’m not sure if it’s texture, taste or she’s just having a hard time getting use to eating food. By about the 8th bite she starts to gag like she doesnt like it. Then the 3rd or 4th sitting with the same food she gags right away and refuses the food. So we’re just doing one two pack of food and moving on. We just finished peas and that went well, until she gagged and shivered.

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Today she tried pears. Of course Tinleigh is right there beside me observing. She asked me if she could eat pears. I told her no. In her two year old jargon she explained to me how she could.
Tin: I know!! Layton have teeth?!
Me: No, she does not.
Tin: My get my teeth out. My be a baby. Then my eat pears too!!!
Me: Tinleigh your teeth aren’t coming out and that wont make you a baby. It doesnt work like that.
Tin: yeah huh mom. My have no teeth and my eat pears.
I answered her with an “okay sweetie”. I just didnt feel like explaining everything. Trialing Layton on foods might be a lot harder than I first thought. Now, not only do I have to keep a watchful eye out for reactions. I also have to keep Tinleigh from eating the baby food and start explaining to her why she can’t eat what layton eats. I wish I could say I see this going well, but I see some tantrums in our future.

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September 22, 2014 Posted by | LIVING | , , , , | 1 Comment

Guest blog

I had the honor of being asked to do a guest blog for Cinicinnatti Children’s about living with EoE.

Check it out HERE

Enjoy

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September 19, 2014 Posted by | LIVING | Leave a comment

Lunch please

Shaving cream fight

Shaving cream fight

Charlie has basically been on the same foods for a couple years now and successfully had clean scopes. One could say he is in remission. Charlie can eat wheat and dairy which are huge in our diets. What Charlie is lacking is proteins. I am at a loss for something new to pack in his lunch. I need some ideas! Please help him.

Here is his current do not eat list.

peanuts

tree nuts

soy (he does eat little amounts, such as if it’s the last ingredient in bread. I’m not talking soy lecithin either, I mean soy flour. Tofu? No way)

sesame

celery

peas

deer

beef

turkey

chicken

scrambled eggs (he can now eat eggs baked in things as long as it’s minimal)

pineapple

the melon family which includes pumpkin

banana

shellfish

froglegs

His list really isn’t bad at all. But he won’t eat chips or pretzels. He’s sick of apples. He’s sick of sun butter. He’ll eat pudding all day long but that won’t sustain him. Any ideas are welcome!!

 

September 14, 2014 Posted by | Charlie's allergies | , , , | 6 Comments

Baby meets the big wide world of food

Little Layton is 6 months old! karas camera 526

I just can’t believe how fast time is passing. I don’t know if it’s my age or that I realize she is my last baby, but I am really soaking in everything she is doing. Paying close attention to her new accomplishments each and everyday. Maybe it’s because being my 4th I know it’s going to go by so quickly I don’t want to miss a beat.
We have moved, yet again, and are now settled for the most part. School is in session and the girls and I are adjusting to life with out the boys all day long.
It is recommended that between the ages 4 and 6 months babies should start baby food. Layton is on an elemental formula and to be honest I was am scared to introduce food to her. My fear is that she’s going to have an allergic reaction, then down the road we will discover she has EoE. I hate that she will face those her whole life. A small part of me prays that even though she’s not able to tolerate regular formula just maybe she’ll escape the world of allergies that consumes my family.
Since moving we are able to return to a previous GI doctor that we had in the past. I’m very happy about this. Layton has her first appointment with this GI doctor in October. She has her first allergist appointment in November. Prior to those appointments we want to have foods started to see where Layton’s path will seem to be going. So we started Layton on baby rice cereal. I mixed it with her neocate infant formula and we went at it. Being that this was her first exposure to rice I knew the chances of her having a reaction were smaller.

I was still very nervous.

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I had also forgotten how long of a process it is to feed a baby for the first time. karas camera 570karas camera 567Of course she loved it and was so happy with the whole situation. karas camera 568

That’s how Layton’s personality is. karas camera 577

She’s ALWAYS happy. We made it through the entire tablespoon of cereal and no signs of anything being rejected. About 10 minutes after eating Layton coughed. Then she coughed again. With out looking at each other Nathan and I stopped what we were doing and just stood there looking at her, waiting. She coughed a few more times and I told her to stop it. Not that she understood me, just because I didn’t want this to turn bad. Luckily it turned out to be just a cough. So we’ll try more cereal today and pray that the second exposure doesn’t turn up any sort of reaction.
We’ll feed her plain cereal for 2 weeks then move onto something else. I’m not sure what route I’ll take on the baby food. It’s going to be a long nerve-wracking road.

September 8, 2014 Posted by | Layton's food exploration, LIVING | , | 2 Comments

The day he took my keys

A little story about me.

Summer of 1998, I was 21. I was currently in college and headed home which was a little over an hour away. It was before cell phones so the only distractions were wild animals or changing the radio station. I was coming up behind a semi and got in the right hand lane to go around him. Just as I approached the back of the trailer to pass him the vehicle ahead of me in the right hand lane jumped in front of the semi and turned right. This caused the semi to slam on his brakes and jack-knife. To jack-knife is when the semi itself turns but the trailer stays straight so it’s now in an L shape. I slammed on my brakes and headed right for the semi. Eyes wide open, arms locked straight out, both feet on the brake I knew I was about to die. I debated for a flash second if I should keep my eyes open or close them. I kept them open. The time waiting for the impact seemed almost like forever, but was too quick. SLAM. I made contact. I screamed then looked around. Did anyone just see that? Shaking and scared to death, probably in shock, I got out of my car and just stood there crying. I remember the truck driver jumping out, yelling at someone to go get that car that cut him off then running over to me and just looking at me like he was in shock i was standing there. I was fine. My air bag had come out but I didn’t hit it. My foot was bleeding, I cut it on the pedal. Other than that I was fine. Later of course I had neck problems and some back issues. One of the scariest moments of my life.

Notice the ring of holes on the front of my car. Those are from the impact of the semi's tire. Check out my skid marks.

Notice the ring of holes on the front of my car. Those are from the impact of the semi’s tire. Check out my skid marks.

About a month later I was home from college and had gone out for a jog. We live in the country. I’m talking no neighbors for a few miles, nothing but fields and Amish around. It was starting to become dusk by the time I was on my way back. I was approaching an intersection and something just made me pick up my pace and go a little faster. Almost like I was being pushed. I didn’t get 100 yards from the intersection when a car passed me then CRASH! There was another car coming to one of the stop signs and the two collided. I really don’t know what happened as they were behind me. I immediately turned and ran back. There was a toddler in a car crying. I could see the driver was unconscious. For some reason I just ran right to that little guy and got him out and held him. What I didn’t know was that when the cars collided they knocked out the power line on the road including power to my parents house. It was now dark. I could see a car coming and slowed. My mom jumped out and was screaming my name. I yelled that I was fine but this lady was hurt. My brother was with her and tended to the driver. When the power went out at their house they thought I had been hit. Once 911 had been called and medics arrived we left.

I had plans that night. I was going to go out with Nathan, we were dating back then, and some friends. I walked in the house and all my dad said was “You’re not going anywhere.” Being that I was 21 I was certain that I was going to leave. So I hopped in the shower and started getting ready in the dark. My older brother popped in the bathroom laughing and said “You’re not going anywhere.” I’m sure we bickered back and forth but he really thought this was funny. I walked out into the family room  and again was told I wasn’t leaving. I said that I was, that I had plans and I would see them later. For some reason they let me walk out. Then I realized they had taken the keys out of my car. I checked every vehicle. All the keys were gone. We lived in the country and back then you just left the keys in them. Now I realized why my brother was laughing so hard and I was furious. I stormed back into the house. I never argued with my dad, he was always too intimidating. This time I just remember being so mad. I asked for my keys and he said no. Then he told me I better not call anyone to have them come get me. I was 21 for goodness sake! He couldn’t do this. But, he did. He reminded me of the car accident I had just had and then the one that happened this night and he wasn’t about to let me go anywhere.  I was fuming. To this day my brother and I still laugh that dad took my keys at age 21.

Today I get it. Now that I’m a mom with my own kids I finally get it. He didn’t want anything more to happen to me. I’m sure it scared the socks off him. I’ve been there with my own kids already, not quite the same situations of course but I’ve been there. I know that feeling.

Thanks Dad for keeping me safe!dad1

Thank you for teaching me to respect your words and that you were just protecting me. dad2 I can only pray that I can teach my kids to respect and listen to me, as well as other adults, the way you taught me.dad3I think that’s something that has been lost in today’s world. I’ll try my hardest just for you Dad!!ry%3D400

Happy Fathers Day. I love you!

June 15, 2014 Posted by | LIVING | 1 Comment

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