LIVING

With EoE, Allergies, Asthma and a G-Tube

A Twisted View

20181206_171112.jpgHow does having children with allergies and EoE effect their siblings? To be honest I didn’t really think about it. I assumed things were running along just fine. Layton doesn’t seem to have any anaphylactic allergens. She does have some strange things she’s allergic to. Starburst and anything ranch send her into a coughing asthmatic fit. Tomatoes and oranges break her face out, make her throat and mouth itchy and her tongue gets bumps. She’s never had any nuts or shellfish. Scrambled eggs make her vomit. She has only tested positive to cherries so we stay clear of those. Occasionally, Layton will eat a little bit of something then complain of belly pains or refuse to eat the rest of it along with future servings as well.

Layton is aware of her allergens and never tries to eat them. She even reminds us sometimes if we accidentally try to give her something she shouldn’t have.

Something I have noticed recently is Layton will say I don’t want to trial that.  I know she has picked that up from my conversations with Gage and Tinleigh. I don’t think she really knows what it means. I have never explained EoE to her.

The thing that caught me off guard and prompted this post was a conversation between me and the preschool head. After school on Tuesday I was talking to the head about their Thanksgiving lunch that week. We discussed me putting safe dessert in a baggie with her name on it. Then I proceeded to ask what they would be serving. As she was listing everything I was nodding in agreeance that everything would be fine. Then Layton spoke up. She said “No, I don’t want to trial anything new let’s just pack my lunch”. She was nervous to eat what they were providing. Oh my gosh! What have I done?! While keeping her safe from the few things that cause her little reactions I haven’t explained anything. When Gage was this age we were explaining to him he wouldn’t be able to eat anymore food and he needed a feeding tube. I now have a paranoid preschooler that’s afraid to enjoy food the way “normal” kids can. I packed her lunch for their Thanksgiving feast so she would feel safe, but we have a lot of talking that needs to be done.

After taking Layton along to the allergist and watching Gage have skin prick testing and Tinleigh do a food challenge to an apple I think I may have scared her for good. I had the girls leave the room when they did Gages skin pricks but she came back in to watch them develop. So her new fears are skin prick testing and she keeps asking when she’ll go trial food at the doctors office. 

Does your non-allergic kid have fears about allergies?

Do they understand what life is like for your allergic child?

How much do you explain at age 4?

Layton’s little list is legitimate, but really nothing compared to her siblings. I need her to understand more about what is going on in our family without scaring her too much.

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December 8, 2018 Posted by | daily life, Layton's food exploration, LIVING | , , , , , , , | 3 Comments

Two year tubie anniversary

karas camera 053Two years have passed since Gage had his tube placed. It seems unreal to me. I have a 6 hear old with a feeding tube. Never in my life did I imagine that happening.
Gage is now over 50 pounds. If I remember correctly, he’s gained almost 20 pounds in two years. As a baby and toddler, before all of this started, he was always in the 70% range for height and weight. He dropped significantly when we had to start eliminating his diet. I’m so happy to say he’s back to 70%.karas camera 770He and I had a quiet moment alone tonight. I told him it’s been 2 years. I asked him how he felt about his tube. Shockingly, he said he likes it because he doesn’t have to eat. Then he giggled. I said you don’t want to eat? He laughed and said no, I like to eat, but doing a bolus is so fast. Then I don’t have to sit there.  I’m so happy he’s at peace with it. For quite a while he always said he wanted it out. I’m sure he still does, I didn’t ask him though.karas camera 1070He’s been trialing corn since June. I think it’s going fine. He doesn’t have any symptoms and doesn’t appear to have an Ige allergy to it. He will be scoped in January to see if it’s a pass or fail. Gage was at 7 foods on his one year anniversary. He’s now eating: green beans, strawberries, blueberries, lemons/limes, oranges, rice, tapioca, cocoa, black olives. Fish is up in the air and he’s trailing corn. So he hasn’t added much. He had one pass last year then one fail. So he had to remove those trial foods which were pork, tomato and cherry. We got him back to a zero count scope before starting corn. Since moving and finding new doctors he’s been trialing corn about 6 months which is way longer than usual and another reason we didn’t get to add much this year. karas camera 286 karas camera 269Gage has had a few strong Ige related problems since we moved. First one happened this summer on my parents farm. Gage went for a ride in one of the farm vehicles. They had been planting soy beans. My kids have been around the farm plenty of times and never had an issue. So off they go then back comes Gage. Swollen eyes and coughing horribly. karas camera 146 karas camera 145It is safe to assume now that he has a strong soy allergy. We had never had this problem in the past. Allergist did tell me that once removing things some allergens could become worse if he comes in contact with them. Gage’s peanut allergy has also become worse since diagnosis. We showered him down, gave him Benadryl and an albuterol treatment and he was ready to go play again. No more vehicle rides though.karas camera 445Another reaction Gage recently had was to salmon. That was horrible. We still haven’t tried any fin fish again. I think we might do it at the allergists office. karas camera 344Overall Gage has not let this tube slow him down. He’s still LIVING life to the fullest. Sure we’ve had our moments of he wants this or that. “It’s not fair.” “Just let me try a little bit.” “No I don’t want a book bag/bolus.” Those are the crappy times we are going to have while we fight this battle. It breaks my heart every time I have to tell him no and be a stern mom. It’s my job though to keep him healthy and safe.

While we moved across a few states this summer we got the meet a special little tubie friend whom I had only met on Facebook. It was very exciting for them all to see each other and know they’re not the only one. karas camera 1276Gage played on the beach karas camera 1274Had a shaving cream fightkaras camera 1266Swam in a lakekaras camera 040Had a bonfirekaras camera 136Flew on a planekaras camera 197Swam at the local poolkaras camera 113Exploredkaras camera 034He even got to go out to eat!karas camera 199He went trick-or-treating

karas camera 1183He traded in his candy for a new toykaras camera 1181He is LIVING!!

karas camera 347These four kids are so lucky to have each other. They love one another. When it comes to food and this darn disease, they have so much compassion for each other. They comfort one another, they help give explanations and hope when food is present they can’t eat. They talk about needles, shots and IV’s. They talk about “one day I’m going to eat”. I hate they go through it, but I’m glad they’re in it together.

Together, Gage went another year with his tube!karas camera 041

December 5, 2014 Posted by | Gage's allergies, 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 | , , , , , , , , | 4 Comments

Our EoE video

I’ve been wanting to do a video for a few years now and have never found the time to do it. Even now I’m typing one handed and feeding Layton. I stayed up until 2am last night after the kids went to bed and got a video made!! Then of course I had issues converting it and uploading it.

Here it is! It shares a quick glimpse of our journey with EoE from January 2010 until today.

EOE

May 23, 2014 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

Spring Already?

Everyone is experiencing the wonderful warmer weather and enjoying it! Nature is blooming all around us at our house and we’re taking full advantage.

We went fishing last weekend. Tinleigh went too. She’s got a lot of firsts coming her way this summer. I’m not sure how her feisty attitude is going to flow as we tote her from place to place and through all the summer activities. Maybe I’ll get her a t-shirt that says chillax, chill + relax.

That way as she’s throwing her fits in public people will still think she’s cute and giggle at her t-shirt.
I really didn’t want to go fishing when Nathan asked. Something just kept nudging me to go. I agreed even though there were 1,000 things I wanted to do around the house. It was sunny out and I thought maybe I could start working on my tan.

                                               So I pack:

the boys snacks

the emergency bag

the diaper bag

stroller

rubber boots

then fed the kids.

We were ready.
We arrive at the pond. Where in the world did this wind come from?! We’re all in shorts and t-shirts. I needed a hoodie. Luckily I had extra pants and a blanket for Tinleigh. The sun magically disappeared too.
The boys instantly took off hunting for things, bugs, frogs, worms, snakes and anything that was gross.

Nathan castes his line and instantly hooked a bass.

He threw it back and instantly caught another.

This went on 4 or 5 times. I kept telling him it was the same one. So he kept the next one. There weren’t anymore caught for a period of time.

That poor fish ate good but must have been stupid.

The boys finally became interested in actually fishing. Gage caught one and was so proud of himself.
Tinleigh did fine until she got tired. Then it was a gloves off battle. I went ahead and mixed her up a bottle thinking that would help her fall asleep. The wind was so strong that when I took her out of the stroller she couldn’t catch her breath. So we moved to the truck. Apparently I didn’t put enough rice in the formula and I had the new #4 nipple on it causing her to keep choking as she tried to drink. Well this was like adding fuel to the fire. Boy was she fired up. She also pooped while she was eating, something else that sets her off. The girl does not like poop in her diaper. After feeding her, changing her and finally finishing the bottle she was happy. Not sleepy, but happy. I’ve also come to realize that unless she’s in her bed she will not nap long. Usually 10 min tops. She’ll even wake up as I’m driving. Most babies fall asleep and stay asleep during car rides. Not my Tinleigh.

She eventually napped by the pond, for ten minutes.

After 3 hours it was time to think about heading home.

I looked at the boys.

They were smiling little mud balls.

Gage had a tiny frog hanging from his finger by it’s tongue.

Charlie had his boots off worried about the mud in his boo boo on the bottom of his foot. The boo boo he got while walking shoeless in the creek where the sewage water ran into after backing up in our basement. A whole other story.

Nathan was proud of the fish he had caught that day.

The fish that no one can eat.

Tinleigh saw her first bass and proved she will bring her temper with her whatever we do this summer.

The boys had a great day in nature, even though everything is in bloom they did not have any asthma or sinus issues!

March 28, 2012 Posted by | daily life, LIVING | , , , , , | Leave a comment

Chalazion

As you may recall (if you don’t please read The Phone Call post) Gage recently had an issue with his eyes and allergies. One morning this past week Gage woke up with one eye swollen.

He's eating an apple

So I gave him Benadryl, washed his face and everything in and on his bed. I assumed it was an allergy of some sort. It didn’t really go away during the day but it didn’t get worse either.

The next morning I woke up to find him like this.

His right eye is fine he just blinked when I snapped this and he wasn’t cooperating enough to get another shot. His left eye was swollen shut! What in the world was going on? There was no goo. His eye was white as could be. So I call the doctor and we go in.

She takes a look in and around his eye. She initially thought something bit him. When she looked under his lid though she informed me he has a Chalazion. A what?

A chalazion is a cyst in the eyelid that is caused by inflammation of a blocked meibomian gland, usually on the upper eyelid. Chalazia differ from styes (hordeola) in that they are subacute and usually painless nodules. They may become acutely inflamed but, unlike a stye, chalazia usually point inside the lid rather than on the lid margin.

Later that afternoon

She sent us home with some eye drops and a follow-up appointment with the eye doctor once it goes away. Easy enough.

WRONG!

So remember the episode of Friends when they are trying to give Rachel eye drops and she’s freaking out. Apparently people are born like that. Gage completely lost it when we tried, make that when I tried to put one tiny drop in. It was horrible. We’re still doing them and it’s still horrible. It doesn’t hurt one bit and he’s completely fine the instant it’s over.

He does look just about normal again and it hasn’t hurt him one bit. We can now add chalazion to our list of weird illnesses.

February 1, 2012 Posted by | Gage's allergies, LIVING | , , , , , | Leave a comment

Patch Removal – day three

The boys woke up and remembered today was the day they get their patches off. I woke up with some pretty strong anxiety about how bad it was going to hurt them. Even though a few came up in a few spots this stuff was like super glue.They have mom take it off one hour prior to the appointment because the tape can irritate their skin when you take it off. I had to tell Charlie 100 times that we would eat lunch then take them off and head to see the doctor. Noon rolls around and I ask who wants to go first. Charlie is so excited he wants his off first. So I give him a sucker and wedge him between my knees. I had him bend over one knee so that his skin would be pulled tight. I grab a corner of a patch and RIP! Charlie jumps up and starts crying. FUCK. 20 more to go. So Gage runs and gets Charlie’s yellow (blankie) and we go at it some more. Charlie jumps every time and starts crying more. I try to stay calm and try to convince him if he stays put we’ll get this done quick. Gage in the mean time has told me no way am I taking his off. UGH.  Then I hear Sponge bob. I hate that little yellow man but he might be my life saver in this instance. So we move to the family room. I sit on the coffee table and get Charlie between my knees again. He can see the tv, has his yellow and I have promised another sucker when we’re done. Every single patch hurts him. Some spots of your back are more sensitive which made it hurt worse. This was horrible. Gage still telling me “no way, my not gonna do it.” We approach the last 5 and do a countdown. DONE! With a huge sigh I looked at Charlie’s poor little back.  Having never done this before I had no idea what to look for. I did see a few hives but it really didn’t look that bad. Onto Gage.

Poor Gage. After watching his big brother try to be tough he just didn’t want to do it. So I let him pick out a sucker and we went to the family room where Sponge Bob was still laughing his annoying laugh. I told Gage to get his froggy (blankie) but he told me no, he was tough. Aww. So between my knees he goes. I rip the first one off and he sort of giggles a nervous laugh and again says “I tough”. I asked if he wanted froggy and he said no, so on we went. He squirmed, winced and grunted but never shed a tear. My 3-year-old is TOUGH! Apparently his skin is more sensitive to the tape. Just made me want to cry when we were done, they were brave and let me do it. I was just glad I didn’t have to pin them down and have them screaming. They both did it and it was over, time to head to our appointment.

Since it took a tad longer than I had expected we were running late. I got them in the car and just grabbed Gage’s tennis shoes. When we got to the hospital I went to put on his tennis shoes and I had grabbed his left and Charlie’s left tennis shoe. DAMN IT! Luckily we had brought the girl boots to return them on our way home. So he got to wear them.

We got right in and the nurse had them put on gowns. I love how cute they are in them. Circumstances always suck when they wear them though. The doctor comes in shortly after we have our gowns on and the boys both immediately ask if they’re going to get needles. Oh what have I done to them. The anxiety they must feel each time I say we’re going to the doctor. The doctor and I both assure them no needles today. So he takes a look at their backs then explains to me what he was looking for. He also informed me that he reads their backs at 48 and 72 hours. So still no baths tonight. I didn’t really pay a whole lot of attention to what he found because he said it could all change by tomorrow. So the boys each get stickers and we’re done for the day! Off to the boot store.

We take the boots in and I explain how I had accidentaly bought girl boots. The good ol’ country folk working there got a good laugh and told us to go find another pair. So as I’m on my knees looking at pre-schooler boots a man approaches me and asked if I needed help. Um, yes, as I’m 9 months pregnant crawling around on a store floor. I told him we needed the widest pair of boots he had. He told me it was my lucky day that he had just gotten in a load of wide width kids boots! Said they had never had kids boots in widths before, I told him I already knew that. So he went and got us a pair. They’re western boots with the pointed toe. Gage slipped them on and LOVED them. He was so excited. So we took them up to the counter and they were $10 cheaper than the other pair we had. Turned out to be a great day after all!                                   That night I again stood them in the tub and gave them a sponge bath. I then laid them on the counter and washed their hair in the sink  along with washing their face. All clean and ready for our last day!

September 16, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , , | Leave a comment

Keeping the Patches On – day two

Upon waking I immediately check the boys backs. They turn into the sweatiest little things when they sleep. We had turned the air down to 70 in hopes they wouldn’t sweat as bad as they normally do. Everything looked good. I had to add a bit more tape to each of them but so far everything was still in place.

My plan for the day – to keep them busy but not running around getting all sweaty and dirty. Keeping the tape dry also means no shower. Ew.

We get dressed and eat breakfast then head out to run errands. After the errands we head to the cowboy store for some boots! They were so excited. They both have wide feet so they haven’t been able to get any because they all tend to run so narrow.

We did finally find a pair for each of them. They couldn’t have been happier!  That is, until Daddy got home. Daddy looked over their boots then wrote something on a piece of paper and handed it to me. “Do you know you bought Gage girl boots?” UGH! I was so frustrated. He got the first pair he tried on, loved them and they were wide enough! How do you know I asked?  He then pointed out to me on the bottom it said Lil Flirt. There was also a scalloped edging across the toe. Not very manly.

So we explained to Gage that we accidentally got him the wrong pair and we would get him different ones tomorrow. He was totally fine with that! Phew

It was definitely the longest afternoon of my life. Trying to keep two little boys from wrestling, wanting to play outside in the heat and keeping them entertained and calm. I felt bad for them. They have so much energy it was hard to contain themselves.

That night I stood them each in an inch of water in the tub and did my best to get their stink off. It was hard for Gage to understand that he couldn’t sit down. He’s still on the steroids for his wheezing so he’s extra irritable, made for a fun sponge bath.

They both made it into bed with out loosing a patch. I was so proud of myself. 🙂

16 more hours till the patches come off.

September 16, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , , | Leave a comment

Allergy Friendly Pasta Salad

I tried to think of something that reminded me of summer to make for the boys. Pasta salad!

I baked two chicken tenderloins in italian dressing until done. Then I chopped them into bite size chunks.

I chopped up cucumber, green pepper, cherry tomatoes, mozzarella cheese sticks and shredded some carrot.

I cooked up two different types of noodles, corn for Gage and wheat for Charlie.

Then I just tossed everything together, making sure not to mix up the noodles.

September 2, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING, What's for dinner | , , , , , , , , , , , , | 2 Comments

Polish Kraut and Apples – slow cooker

Made a super easy dinner for Nathan. I love slow cookers!

Polish Kraut and Apples

1 can (14oz sauerkraut)

1 package (16oz) smoked polish sausage, cut into chunks. I used a beef sausage.

3 medium tart apples, peeled and cut into eighths

1/2 cup packed brown sugar

1/2 tsp caraway seeds, optional

1/8 teaspoon pepper

3/4 cup apple juice

I was only making this for Nathan so I cut everything in half.

Place the sauerkraut in an ungreased slow cooker. Top with meat, apples, brown sugar, caraway seeds if desired and pepper. Top with remaining sauerkraut.Then pour the apple juice over all. Cover and cook on low for 4-5 hours or until apples are tender.

Nathan thought it was wonderful. He said I could put it on the menu again.

August 29, 2011 Posted by | LIVING, Nathan's allergies, What's for dinner | , , , , , , , , , , , | Leave a comment

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