LIVING

With EoE, Allergies, Asthma and a G-Tube

Oh Baby

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If she only knew.

November 18, 2014 Posted by | LIVING | Leave a comment

On A Dime

I had a great day today. Scrubbed the kitchen. Switched Layton’s wardrobe up a size. Organized the laundry room / mud room. The girls were happy all day, and so was I. Layton discovered her screaming voice. 20141117_154232Tinleigh stayed out of daddy’s camo paint. We picked the boys up from school and everyone was in a good mood. Great day all around. We continue with our typical routine for the evening. Boys get a computer turn. They do homework. They eat dinner. Nathan comes home. Total daddy excitement is in the air. They play, shower and eat some more. Typical.

We’re going to back up though to the part where the kids eat. Tonight Gage asked for salmon which he’s been eating since October 2013. I cooked him up a fillet in his butter and served it to him. I then went about my evening as usual. He didn’t say a word, but once Nathan was home I noticed he didn’t finish it and had left the table. Tinleigh had been begging Nathan to eat.  He agreed to make her some pancakes and Gage chimed in that he wanted some also. Gage was helping Nathan cook and he asked me if I had fairy godparents what would I wish for. I waved my hands over his body and said I would wish that you don’t have allergies anymore. He replied “and no button too?” I said of course no button! I then noticed his upper lip was red. I took a closer look and asked him if it was itchy. Nathan slightly shook his head yes. Right then, my day turned on a dime. I then noticed a spot on Gage’s chest that had a bump and was all red from him scratching it. Gage didn’t want to but said yes he was itchy, then quickly tried to think of something other than the fish that it could have been from. He told me it was from the corn chips that he had last night. I went for the Benadryl but as I did Gage accidentally burnt his knuckle while helping flip the pancake. Off he went to the bathroom to run water on it. Nathan went in to check on him and I could hear Gage was upset. Nathan returned and sent me in. Poor Gage, his little eyes were all red from crying and he told me his eye itched. We went to the couch and I got some medicine for his little burn. While we sat there he said “Mom, I think I’m allergic to fish” then the tears came. OH THIS SUCKS!!!!! So I held him and tried not to get upset too. It’s been a year that he’s eaten fish. Why now? Why do their little bodies play these cruel games? I tried to be reassuring and told him that sometimes you can be allergic to one certain kind of fish but not other kinds. Which is true. So we’ll have to try a different type in a few weeks. We’ll give his body a chance to relax a little. It’s just so frustrating though, sad too. PAUSE………… (coughing in the distance)20141117_200241

I ran upstairs and Gage was continuously clearing his throat and coughing. I asked what was wrong. He said his throat was gunky. I asked if anything else was wrong and if he felt worse. He said yes. That sudden flash of panic rushed over me. Oh shit he’s having a delayed reaction. It’s been a good 2 hours since he ate the salmon. This is after the dose of Benadryl an hour ago. Okay don’t panic mom (in my head) we’ll just give him some more Benadryl. So I give him another half dose. He keeps coughing and clearing his throat so I ask him some more questions without suggesting anything. Don’t ever ask direct questions like does your throat feel like it’s closing. Let them describe it to you in their own words if they’re old enough. It’s still gunky and a little tight because it’s gunky. Nathan and I have a quick huddle and decide to give him an albuterol nebulizer treatment. Yes, of course I’m still panicking. That’s what a mom does. Nathan assured me that if it was really bothering him he wouldn’t be sitting there calmly playing a video game. He says this from his MANY experiences. I agreed. So I sat through the nebulizer treatment watching him like a hawk. Things seemed to be improving. His actual respritory system wasn’t effected or we would have immediately given him the epi pen. We did the nebulizer as caution, preventative. As for now he’s okay. I’m thinking though we won’t be trying any other type of fish until a long conversation with the allergist or some testing. I’m not willing to take that risk.

Dear Allergies and EoE,

I HATE YOU.

Forever,

Kara

November 17, 2014 Posted by | daily life, LIVING | , , , , , , , , | 2 Comments

Veggie Soup

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Traditional beef veggie soup on the right. Charlie special allergy friendly veggie soup on the left. I love the crockpot. It saves me most days. Trying to make, what seems like, 50 different plates of food if i can make Nathan and I dinner in the crockpot thats one less worry. A heck of a lot less dishes too!
The difference between Charlie’s soup and ours is that I put cooked ground pork and veggie broth in his. He also can’t eat the bag of frozen veggies because of the peas. So I chopped carrots, potatoes and added green beans and corn.
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Yummy!!!

November 11, 2014 Posted by | LIVING | Leave a comment

I still cook!

Things have become so crazy with the kids I never post about meals anymore. Who knows, maybe that’s the way my blog should go.
Tonight I was determined to do a post on this fantastic black bean soup I was going to make. Here it is.
Black bean soup

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I didn’t follow a recipe today. I felt I’ve made this enough times I would just try the dump method.
First things first, get those beans softened. I, of course, forgot I had this planned and didn’t soak my beans overnight so I opted for the quick soak method on the bag.

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Make sure you get them soft. I did not. We had hard beans in our soup. Blah.
After you soak your beans drain them and pick out the bad ones.

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Put them back in the pot and add a box of broth. I chose vegetable so that Charlie could eat it too.

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Allow helpers to help or they pout.

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A couple dashes of red pepper flakes for heat.

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Turns out my helper just wanted to be in the pictures.
Add a few shakes of cumin.

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A few shakes of chili powder.

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A can of fire roasted diced tomatoes. I love these things!

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I would typically saute my onion and garlic but I was running out of time so I chopped and dumped them in. See the little minced garlic pieces in there?

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Add some carrots for color and healthiness.  I didn’t have any peppers on hand or they would have been tossed in as well. Put the lid on and let it simmer. Wait! I know,  I forgot the meat. I had a ham hock and some ham steak to dice and put in there. I completely forgot.
While it simmers braid some hair.

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Play with the baby

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After hours of simmering taste it! If it suits you its time to mash it up. You can use a potato masher or let the soup cool a while and use your ninja blender.

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I didn’t blend all the soup.  Maybe 3/4ths of it. I added this back to the crunchy bean soup in the pot and continued simmering it. I completely forgot to take a picture of a bowl of the finished soup. How could I forget? Well, I have 4 kids. Dinner is the craziest time of day for us. I was also bummed I had forgotten to add the meat and quite upset my beans were hard. I hadn’t realized they were hard until the blending process. Luckily the flavoring of the soup was yummy and was edible.  So we topped our crunchy soup with sour cream. Had a slice of ham steak on the side along with a chunk of french baggett.

November 5, 2014 Posted by | LIVING | Leave a comment

Asthma

Its going to be a long rough winter.wpid-20141104_162459.jpg

We have 3 nebulizer machines now, so it will speed things up a bit.

We met our new allergist today. She was not intimidated or shocked to hear our family history. She didn’t even bat an eye. I like her. To my surprise though the boys asthma is out of control right now. Charlie failed the breathing test big time. She said one foot almost in the emergency department door bad. Gage was also bad on the scale but not as bad as Charlie. So we have a new action plan for asthma and new daily inhalers for winter. Tinleigh doesn’t officially meet the allergist until Thursday. The allergist heard her coughing just as bad as Charlie and after explaining Tinleigh just finished a round of oral steroids Tinleigh now has the same daily inhaler. I had to make an appointment with the pediatrician after the allergist for Tinleigh because she was still wheezing. The allergist called the pediatrician and let him know what’s up.She told him Tinleigh needs the same inhaler and asked him to send in a prescription for her. I think the doctors here are going to be a good fit for us. So everyone but Layton, knock on wood, is still on breathing treatments with the addition of inhalers. I am praying this is a good plan that will keep the asthma flares at bay all winter.

The appointment wore me out. Four kids in a small room. It was so hot. Tinleigh and Gage were half-naked by the time it was over. I was trying to cover everything I could remember about the boys. Bringing up all the history of everything they’ve gone through. Just thinking about it made me tired. Then talking about the future and what we have to face made me even more tired. I didn’t think the appointment would take that long since we were the first ones of the day. WRONG. It took 3 hours. There was no wait time either. I had only packed snacks for an hour. So of course they were all starving, hot and cranky by the time we got out of there.

Once we left I had to immediately call the pediatrician to get Tinleigh’s appointment set. Well, I had forgotten I was low on gas that morning. We pulled into the appointment with 3 miles left to go. When we got in the car after  the appointment I had forgotten again. So on the phone with the nurse I noticed I had 1 mile until empty. My heart raced because I had no idea where a gas station was. I couldn’t hang up and map one. Luckily I saw one up the road. We had a stop light and traffic to get through though to get there. We pulled in as it flipped to 0. I was so relieved. I had the 4 cranky butts, pouring down rain and was exhausted from the appointment, would not have been a good day to run out of gas.

Now we’re home. Everyone has done yet another round of breathing treatments. Everyone is full. Layton tried carrots for the first time and loved them. I’m just praying everyone heals during the night and no one goes backwards. I’m not ready for an ER visit or hospital stay. We have no action plan for that.

Time to find a sitter/helper/personal nurse

November 4, 2014 Posted by | LIVING | Leave a comment

Our Halloween

imageI never thought it would end with an epi pen. I’m so cautious.
We started our Halloween festivities like most everyone does, by picking our pumpkins.

imageThen with caution, for Charlie, we carved them.

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Charlie has an allergy to pumpkins and with pulp contact breaks out in hives. So every year since he was able to help he has had to wear gloves. We have taught him the safety rules he needs to follow so he can join in the fun.

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Nathan always takes charge of the pumpkins and does a great job.

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This year the boys were really trying to do things on their own.

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I hate that they’re actually big enough to do it.

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When it came time to get the candles Nathan asked me if we had any. I hadn’t even thought about buying pumpkin candles. While trying to think if I had seen anything we could use while unpacking Tinleigh disappeared.  She returned with the most brilliant idea, birthday candles.

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I just love her.
So everyone got a birthday candle and we were set!

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I painted Laytons pumpkin teal and explained to the kids all about the teal pumpkin project. The boys really thought it was a cool idea.

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Before Halloween got here all 4 kids got the respritory cruds. Gage kicked it off with fever and wheezing. Followed by Tinleigh who got it the worst and needed oral steroids.

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Charlie’s throat swelled and we thought for sure he had strep.  Turned out he didn’t,  but his asthma did flare which was a surprise to me.

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Layton just got the sniffles. No signs of asthma yet. I will say I’m very nervous about how she’s going to turn out as each of the kids are worse in the order of birth.
On the day of Halloween the boys dressed up for school and had parties. The girls and I joined them at school so I could make sure they did not receive unsafe foods. Having 10 other parents I didn’t know in a classroom passing out food I didn’t feel the boys would get their safe food. The room moms had called me ahead of time to accommodate the boys, but it’s not their responsibility to make sure my kids stay safe. Having food, games and 25 kids to keep in check, I doubt making sure my kids get the correct snack was at the front of their mind. Gage was handed a couple things he couldn’t have. Charlie’s snacks turned out to be a bit different from what was discussed,  I’m very glad I went to both parties. After school I brought the kids home to rest a bit. They were way to excited though. I stuffed them all full of formula and food. Those that needed it had a breathing treatment. Then we got dressed and headed downtown to daddy’s office. In our area its more rural and people don’t trick or treat. I had heard the main street in a neighboring town really does it ip so that’s where we went.

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It’s been so warm here that we were in shock to have a 48° trick or treat night. The kids all had on layers under their costumes but we were freezing. So we decided we would give it a try and if we got too cold we would head up to the church and just do trunk or treat.

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Houses were decorated and the community was really into it. It was fun, but we were still cold. I think we did about 10 houses and decided we were done, but not before Tinleigh wanted her picture taken with this giant spooky tree. She was so nervous to walk up beside it, but grinned so big. It was too cute.

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I handed each of the kids a piece of candy when we got in the car and took their buckets. I didn’t see any teal pumpkins but im sure if we would have kept going we would have seen a few.
We drove up to the trunk or treat to finish up our night. The kids had a great time. Tinleigh was in aww at all the candy she had in her bucket. I was surprised and excited to see a packet of cherry kool-aid in her bucket.

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Its an elemental safe drink!
Home we went and the boys could not wait to sort their candy.

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Nathan had ran to the store since we had separate cars.
The kids and I arrived home, went straight inside and dumped their buckets on the kitchen floor. We sat in a circle and began to sort.

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I have the kids sort their candy so they visually know whats safe and what isn’t.

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Gage took extra caution at times and used his foot to get rid of things.

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I thought we were doing ok. No one was trying to eat anything and everyone was busy. As I’m looking at Gage I smelled a very strong peanut butter smell. I look around and look back to Tinleigh. I realize right in front of me, not 2 feet away, she had an opened mini resse’s cup and it was missing a nibble. OMG Panic flushed over me. I couldn’t think but I was in motion. I ripped off my costume. Grabbed my phone and dialed Nathan then handed the phone to Charlie. I quickly ripped off Tinleigh’s costume. She began to cry. I told her mommy wasn’t mad and everything would be okay. She cried that her mouth hurt and she began to itch her inner ears. This of course made me panic more. Trying to keep my composure I saw nathan pulling in and told the boys to run and get him. Of course they went running and screaming for him. As Nathan was coming in I had the epi pen in my hand and was pulling down her pants. She began coughing. Nathan said ok let’s do this. She was now beginning to vomit so I ironically grabbed a candy bucket for her to puke in. I then held her in a paralyzed position as Nathan shockingly jabbed her with the epi pen. The trick about an epi pen is you dont just jab and your done. You jab and have to hold it there for at least ten seconds so the medicine can drain out. To her surprise she screamed and tried to grab the pen out. I held her hands and tried not to cry as Nathan assured her everything was going to be ok. She continued to vomit up the toxic to her system candy and Nathan held her in his lap as I got her a wash cloth.

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I found the candy I had thrown in the sink. She had only taken a nibble.

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We know she’s anaphylactic to dairy but nuts are an unknown. She’s never tested positive to nuts. However, now that shes been exposed to nuts it might turn into a whole new game. During all this I could hear Charlie crying in the bedroom and I really have no idea what they were doing in there. Makes me sad though they had to witness their little sister go through this. Before Nathan jabbed her I asked them to leave the room. I didn’t want them to have a visual burnt into their minds.
Tinleigh was/is fine and since she was already on prednisone it worked out to her advantage.
Another Halloween in the books. I really wish it wouldn’t have ended so horribly. I’m trying to teach my kids hands on how to be safe and what to look for. If I would just remove everything that’s not safe how will they ever know for themselves? Food allergies are scary and even the most cautious situations can turn deadly.
A little shout out to Layton who chilled in her car seat happily during this entire candy situation.

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November 1, 2014 Posted by | LIVING | 1 Comment

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

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