LIVING

With EoE, Allergies, Asthma and a G-Tube

Five Year Anniversary

Today I told Tinleigh it was her 5 year tubie anniversary. She looked at me funny and said “I dont even know what that means.” I explained that 5 years ago today she had her feeding tube put into her belly. She was still very confused. I asked what part didn’t she understand. She said “I thought I was born with it”.

That caught me off guard.

So tonight I showed her my posts about when she had her tube placed. We read over the day she got the tube and the days following. Not a memory of any of it in her memory bank. I am SO thankful I’ve written this blog and was able to go back and show her. I had done a small series on what it’s like having your toddler get a feeding tube.

Today Tinleigh thrives. I wouldn’t say she loves her mic-key button, but she is at peace with it. I am proud of her. I admire her. She has a warm heart for everyone. She has shown us, just like Gage, that a tubie can do anything. DSCN3970Day one

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Swimming

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Dancing

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Knows how to have fun with her woes.

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Fishing

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Softball

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Bounced

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Learned to ride a bike

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Sported a 2 piece!

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Played in the snow

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She genuinely enjoys life and lives it to it’s fullest. Her allergies and feeding tube don’t stop her from finding the joy in the life she was given.

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January 14, 2019 Posted by | LIVING, Tinleigh's allergies | , , , , , , , , | Leave a comment

Vacationing With Food Allergies

Gearing up for the trip Adventure Snowman brought us I was excited. However, there was a big pit in my stomach worrying about the kids being able to eat. How would I keep them fed and safe?

My first plan of action was to make sure our hotel rooms had a kitchenette so I could cook something if needed. Next, I packed plenty of snacks. So I devoted a Rubber Maid container to all snacks. I also threw in things like Tinleigh’s safe noodles, grits and syrup so I would be able to make them for her in the hotel. Our condo had a full kitchen as well. Having the snacks handy when we stopped for gas was great because it also saved us on gas station treats. I made sure and packed feeding tube formula ready to go for feeds during the car ride.

I knew we would be going out to eat. It scared me every time. I was so nervous to let them eat anything. I always knew how far the closest ER was. I had 4 epi pens and a bottle Benadryl on me at all times.

img_7655Our first night we stopped at Applebee’s.  The kids have never eaten there before. It was Christmas night and surprisingly there was a wait to be seated. Once we finally had our table I told the boys to figure out what they wanted and then I would make sure it would be safe. Charlie ordered chicken strips and fries. He would be fine. Gage wanted the kids steak. I explained to the waitress that Gage had food allergies and asked if they were able to cook his steak in a cleaned off area or a separate skillet. She left to go ask the chief. She came back and explained the chief felt they were super busy, which they were, and he didn’t feel safe about worrying about making a special steak that night. I said I completely understood and Gage went with a double order of mac n cheese with yogurt and fruit. I was honestly relieved that they were so honest. Now, I could have put up a stink that they wouldn’t oblige to what we needed, but why put Gage’s life at risk? He filled his belly and was happy. He understood the situation.

20181226_184043Next up was Augies Alamo City BBQ Steakhouse. If you ever visit San Antonio this is a must. The set up is sort of a school cafeteria. You start at one end of the line picking your sides, then move down to the next station where you pick your meat. Lastly is pickles, chips, dessert and you pay. Before heading out we fed Tinleigh full of formula so she wouldn’t be hungry. I packed her a few snacks in my purse. I packed Gage a few things as well just in case. We looked over the side items, mac n cheese was the only safe thing for him among the baked beans and different types of potatoes. He then selected the pork ribs for his main course. It didn’t hit me until they were slicing it that they cut all the meat in the same spot. This would be problematic for Nathan as he is deathly allergic to chicken. I got Gage situated with his food then let Nathan know about the cutting area. Tinleigh spotted some lays chips and asked for some iced tea. She was set and happy. Nathan risked them cutting his meat in the same area. I was having a mini panic attack. In the end everyone was fine! Not an itch in site. I highly recommend the pork ribs if you visit. Everything was delicious though.

20181227_123524Our second day in San Antonio we toured all day. I had plenty of snacks for everyone in my backpack. We decided to hit Margaritaville for lunch.  I had never been to one before so I had no clue what we were walking into. Luckily the kids menu had ribs on it and that was what Gage wanted. They were delicious. We did have a hiccup with Tinleigh and Nathan here. Tinleigh was able to order a cup of applesauce which was super exciting for her because it was her new food and they actually had it. Problem was they brought it out on Charlie’s plate full of breaded shrimp. We explained why it was a problem. They happily brought her a new cup. I washed it off before giving it to her in fear they just took the cup then brought it back again. Nathan had a Cuban sandwich which is all pork but something got to him. We’re not sure what. A few Benadryl later he was fine. 20181227_123546That night we were all exhausted from touring San Antonio. We saw the Alamo, rode a boat on the Riverwalk, went up the elevator in the Tower of America’s and visited the Pearl. So we stayed in and ordered pizza. Luckily Gage’s safe and favorite, Pizza Hut, was right around the corner. So we got his safe pizza and found a local place for us to try.

The next day we headed further south to South Padre Island. I wasn’t quite as prepared as I had wanted to be. By the time we got there they were all starving. We stopped at Walmart before crossing the bridge onto the island. I let them all pick something to eat. When we arrived at the condo Charlie jumped out of my parents car and came running to me to let me know he had just eaten peanut flour. He kept saying I’m fine. He had picked out the Keebler coconut cookies that are similar to the girl scout cookies and none of us had read the bag. When he started eating a cookie he also started reading the ingredients. After one bite he threw the cookie out the car window. I just stood there staring at him with lots of thoughts going through my head. He didn’t feel a thing. So I told him the instant he did he needed to let me know. My instinct said to epi pen him, but he wasn’t feeling anything. He never did have any sort of reaction. This led to new blood work being done now here at home to see where his peanut allergy is. No results yet.

Our first night on the Island we went to an amazing seafood restaurant called The Sea Ranch. This was my first allergy experience of feeling just a little bit like my family might feel. Since having the kids and developing my own allergies I had never really been in a situation where I couldn’t eat. The Sea Ranch menu only had a handful of things I could eat. It made me feel sad for them. I now had a little better feeling of their side of things. It didn’t feel good. So now that I was already feeling some emotions we had to figure out what the boys could eat. Charlie wanted the Mahi Mahi and I was fine with that. Then Nathan ordered appetizers. He chose a dozen oysters, jumbo shrimp cocktail and calamari. These appetizers looked amazing. The waitress also brought us some bread. Everyone grabbed a piece and I asked to see the ingredients for Gage. Good thing I did, There was egg flour in the mix.
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Once Charlie saw all of this he told me he didn’t need the Mahi Mahi anymore. He was also super excited to try an oyster. I wasn’t so excited about that. Having been able to always eat shell fish with out trouble Nathan and I finally agreed it would be okay. Apparently though my nerves were showing because Nathan kept asking me if I was okay. Charlie picked up an oyster as Nathan explained how to eat it. I can’t believe he tried it. He LOVED it. 20181228_183314

See the calamari on that plate? It was giant and they all said it was the best they had ever had. As everyone was snacking on the appetizers Nathan looks at me and says oh my gosh you can’t eat any of it! He then quickly tried to find something I could have. I told him I was fine. It was the perfect opportunity for me to give Tinleigh a bolus. She came and stood beside my chair and we began. Tinleigh has no issues with her tube and feels quite comfortable doing this in public. We definitely got a lot of looks while doing it. She didn’t notice though. We ordered dinner and Gage chose a steak. Two bites in and his ears were itching. I gave him a Benadryl and then he told me his lip felt puffy. I could see it was a little red. He and Charlie went to the restroom so he could rinse his mouth out. The Benadryl helped and Gage ate all the crackers off the table the waitress had brought since he couldn’t eat the bread. We were bummed about the steak but the reaction was minor. My cucumber martini got me through dinner. 20181228_185703The next day Nathan and the boys did their fishing trip so he baked up the fish they caught. Gage can eat tilapia and bluegill all day. Salmon and tuna are anaphylactic. So the thought of him trying this trout had me a mess, on the inside. I really didn’t want him to eat any. How would I tell him though that he couldn’t eat what he had spent half the day catching? 20181229_104913_resizedLuckily, he had a backpack of formula and really didn’t want any fish anyways. I’m not sure if he was too nervous to try it, but I left it alone. The only people that could eat it were my parents and Charlie. They LOVED it along with Nathan’s homemade hushpuppies. Nathan and I had burgers. 20181229_192458.jpgWhile staying at the condo we ate lunch in. Safer and easier all around.

20181230_204731The following evening we decided to try some local Mexican.  We checked out Senor Donkey. Mexican makes me nervous for many reasons. When our waitress brought chips and salsa and we asked if they made them there or if they were store bought and she had no clue what we were saying I was super nervous. This place was authentic. So we didn’t let Tinleigh have any chips. Another waitress came to take drink orders and she spoke some choppy English. We got our orders in and I felt okay with Gage getting the pork tacos. I had an amazing watermelon margarita. 20181230_192601A few bites in though and Gage was complaining about itchy ears again. We weren’t sure if it was his nerves or if it was real. So I passed him an apple from my purse along with a Benadryl and we took his tacos back to the condo for lunch the next day. Tinleigh had, had enough by this point. She couldn’t eat anything there, she was tired and was getting all worked up. We ended the dinner with her in tears because eating sucks. Gage was fine after his Bendaryl, but I had to feed him once we got back to the condo.

20181231_155050.jpgOur last night on the island was new years eve. Also, our 14th anniversary. My parents happily offered to watch the kids. We took them up and headed out for the evening early. Our plan was to just check out the different bars and restaurants having drinks and appetizers as we go so we would know where to go next time we visit South Padre Island. We started out at Pier 19. It was a little restaurant on the water. I got to see a dolphin playing in the water while we ate.  Next stop was the Wanna Wanna beach bar. Being that it was cold and somewhat rainy they had a cover around everything. So it wasn’t too exciting. I’m sure when it’s warmer out it’s a fun place. There was a sign that said “Please no dancing on tables with heals”. We then headed to a restaurant where Nathan decided he wanted a steak dinner. So Liam’s Steakhouse and Oyster Bar was our last stop of the night. 20181231_185216.jpg

We both had some steak, amazing cocktails and took some chocolate mouse cake back to my parents as babysitting payment. We picked them all up some pizza hut as well. Yeah, wild New Years Eve done by 7:30. We spent the rest of the evening playing Uno with the kids. Then we saw some fireworks from our room. No one had an allergy attack. I would say that’s a good note to end the year on.

January 12, 2019 Posted by | daily life, LIVING | , , , , , , , , , | Leave a comment

Adventure Snowman

 

 

I decided to do Christmas a little different this year. We were going on an adventure. It took a lot of decisions and planning. The only places we really ever go is to visit my parents in either Ohio or Florida. We like to camp, but that’s always for a quick weekend. THIS trip was going to be a real adventure, on the road, multiple stops, lots of driving, kind of adventure.

How does one present an adventure from Santa? By way of snowman of course! The front of the envelope that held a card told them they had to open their other presents first. He was then marked with tags on the back for which kid opens which box. Otherwise there would have been a fight.


Adventure Snowman

Charlie opened the envelope and read the letter from Santa.

Dear Charlie, Gage, Tinleigh and Layton,

This year I have planned something extra special for you.

I am going to send you on an adventure.

Its sort of a big adventure.

I have packed your bags.

There are hotels reserved.

So, get ready, youre leaving today!

Yes, today!

Want to guess where youre going?

Unwrap this snowman to figure it out!

 

All my love,

Santa

They were so excited after hearing this. First Gage opened the head. Inside he found 8 folded up papers and one rolled up on top. The rolled up paper told them we were headed to San Antonio. The folded up papers were “coupons” for our day long tour of San Antonio. We were going to do a bus tour, see the Alamo, go to the top of the Tower of Americas, do a 4D movie there and take a guided ride on the Riverwalk.

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Next up was the belly. Layton unwrapped this one and found goggles, floaties and suntan lotion along with the next destination.


page2Last box was for Tinleigh to unwrap. She unwrapped the last letter that told us we would end our vacation in Fort Worth. We had a day adventure planned to tour the stockyards. Somehow I managed to find a small bit of time to make everyone a special T-shirt!

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Top row: my dad, Charlie, Tinleigh, my mom.

Second row: mine, Nathan, Layton, Gage.

It was so fun coming up with something different for everyone. I’m not a matchy-matchy let’s have a family vacation t-shirt kind of girl. Mom and Dad got South Padre t-shirts because they’re snow birds and I figured they would get more use out of it than a Texas t-shirt. 

If you look back in the first picture you can see a similar smaller white box next to the snowman. That one was for Charlie and Gage. When they opened it they foundfishingThough this was a gift from Santa, Nathan’s parents gifted this special fishing trip to the boys. 

Once it was all opened and the surprised was revealed it was time to get moving, we had to get on the road. 

Santa had actually packed all the clothes ahead of time, along with the medical bag and most of the snacks. We just had a few last minute things to toss in the car. We were out the door by 1pm. 

Up next: cold weather, rain, food allergies at restaurants and what we saw.

January 11, 2019 Posted by | daily life, LIVING | , , , , , | Leave a comment

Food Challenge and Skin Prick Testing

Having passed their Thanksgiving scopes we needed to march forward. That meant Tinleigh wanted to do an apple food challenge and we needed to figure out what is making Gage so snotty.

Off to the allergist office we went. 20181126_085637.jpg

Tinleigh tested positive to apple at her very first allergy skin prick test as a baby. As soon as we removed apple baby food from her diet her gunky throat disappeared. We have never tried it since then. Tinleigh decided it was time. After letting Gage try potato at home and almost needing an epi pen I said we were done trying Ige allergic foods at home and we would do apple at the allergist office.

I had a discussion with Gage about finding out where his peanut allergy is. We thought maybe since he’s older he would grow out of it a little bit. That was our hope anyway. We also wanted to see if maybe he had started to become allergic to something he was eating a lot of like wheat or dairy. Lastly, he wanted to see where his chicken allergy is in hopes of getting to trial chicken.

Luckily, I got them both in at the same time. We started with Gage first. It was decided we would check his environmental allergies as well. We hadn’t done a full panel of environmental in years. I didn’t like doing that to them and if they’re stuffy they get allergy pills. It doesn’t really matter if we knew what it was. So that would be 60 skin pricks right out the gate. I then checked off all the foods we needed to check and that added another 40.  It was decided at the last minute to add hamster since we now have 4. so Gage got 101 skin pricks on his back. I love him. He is honestly the best patient I have. He always does as he’s asked, never flinches and has never fought. He held tough through all the skin pricks. I don’t think I could hold it together as well as he did.
20181126_092408.jpgSee that great big white spot? That’s peanut, he hasn’t outgrown it. So after Gage went through this we headed to the lab for a blood draw. The funny thing was beans, pea, salmon and potato all came back negative. We needed to check his blood levels on these along with the foods that came back positive.

20181126_101707.jpgWhile Gage’s back was welting up we started Tinleigh’s apple challenge. She was so excited, and I think a little nervous. But oh did she enjoy it. I think she grinned the whole 2 hours we were there. It went amazingly well. Tinleigh slowly ate an entire apple for the first time in 6 years. That’s huge for her diet. Apple is in so much stuff, you have no idea until you have to watch for it. Fruit strips were the first thing she wanted. We went right to the health food store and bought everything she had always wanted. Our rule for now is apple 4 days a week at a minimum. We haven’t had any issue meeting that requirement. We just have to keep it limited to one serving a day. I also requested Tinleigh have a blood draw for alpha gal. Since she started her airborne reactions to dairy and beef with no answer I wanted it ruled out. We also went ahead and drew for all environmental allergens on her as well since she had never been tested on any of them.

Gage’s results are that he’s allergic to just about everything outside except 5 molds, horses, dogs, mice and hampsters. For his foods he’s extremely highly allergic to potato and peanut. Followed by pea, egg and soy. Brazil nut, Almond, Tuna, beans and sunflower seeds are low. Luckily he was negative to chicken. However, salmon was negative on both tests and we just epi penned him on that a year or 2 ago. So we’ll attempt an in office food challenge on the chicken and move on to trial it for EoE if he passes at the allergist office.

Tinleigh’s results. Tinleigh’s Alpha Gal test was negative. Her beef and pork are positive though. Her blood work shows she is allergic to some molds, trees, grasses, weeds and cats. So basically everything. I’m relieved about the Alpha Gal test. After speaking with her GI doctor we have decided to reduce her steroids and see if she can continue eating all fruits and vegetables. We need her anger issues back under control. So instead of moving forward with a few more foods we’ll adjust the meds. She does get to keep apple.  In reality she only has a few more things she can add to her diet anyways. So game plan is to reduce steroids, scope in 3 months. We’ll see what happens!

December 12, 2018 Posted by | Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , | Leave a comment

The Results During Thanksgiving Dinner

We had Thanksgiving dinner this year. Something we haven’t done in I don’t know how many years. I was nervous, but excited. We made sure there were safe foods for the kids to have so they felt fully included. We also took steps to make sure they didn’t have anything that would cause them to have an allergic reaction. So much food, so much anxiety.

The girls learned how to set the table. They thought that was awesome. 20181122_092635.jpgFamily all arrived and dinner began. I made plates for all of my kids. It was really a big deal for all of them. Charlie had never had stuffing before. He loved it. This was also the first time he had turkey in probably 8 years. Mom made a ham so that Gage was able to have ham instead of turkey. He also got to have stuffing. Not his favorite. This was Layton’s first Thanksgiving ever at age 4-1/2. She of course wouldn’t eat hardly anything.

20181208_161955.jpgAs I made Tinleigh’s plate my emotions got the best of me. She had green beans, corn and a baked potato. We also scoped a little homemade strawberry jelly into a tiny cup for her. I began crying as I scoped it all onto her plate. I was so happy for her. Excited she had this many foods in her diet. I was also so sad that this is her life. Will she have more Thanksgivings like this in her future or is this her first and last? Things that race through your mind that you know you can’t dwell on. I wiped my tears and set her plate in front of her. She grinned ear to ear. She was so excited to just sit with everyone and have a big plate of food.

Just as I was starting to make my plate my phone rang. It was Cincinnati. So of course I answered. It was a doctor calling to tell me that both Gage and Tinleigh had passed their scopes. Well that really got me going. I was shocked and asked him to repeat the results. He confirmed he had said they both passed. I was over the moon happy for them. I got to announce to the table that they both had passed. That meant that Gage’s gunk and snot is not from EoE and he can continue eating with his steroids. Tinleigh passed eating all fruits and vegetables and the steroids are working for her!

It was really the best Thanksgiving ever!

 

December 11, 2018 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , | 1 Comment

Scope Number 3 in Ohio

Off we went. Six humans, one bearded dragon, 3 dwarf hamsters, plus one more on antibiotics. We made the days long journey to Ohio, dumped our stuff at my parents house then Nathan, Gage, Tinleigh and I headed back out the next day to Cincinnati for their scopes.

Gage was going to be scoped to check and make sure his steroids were still working. He had been a snotty gunky mess since summer. We weren’t sure if it was Ige allergies or his EoE flaring. Tinleigh was being scoped because she had started steroids 3 months prior along with all fruits and vegetables she isn’t allergic to.

As we packed up and left Tinleigh was crying as she had been for 2 weeks prior when she learned scope time was coming. We assured her everything would be okay and distracted her with different thoughts.

My kids have stayed at hotels so many times, but it never gets old. They love it. Which in my book is a plus. It makes them happy and they feel fancy. I want these rock stars to always feel that way.

We arrive at the hospital the next morning and begin the normal check in procedures. Tinleigh is just fine. She had cried before bedtime so I was happy to see her smiling. We moved into our room and went through the million question interview as we always do. Gage and Tinleigh were happily distracted on their tablets.

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Gage gowned up, climbed on the bed and received his loopy meds. He giggled and laughed as the effects set in. I walked with him into the OR. Kissed his head and held his hand as they put the IV in and drew blood. Then he was off to sleep. I made my way back to our room and opened the door to find Tinleigh sitting on Nathan’s lap crying. Not hysterical, but weeping and very upset her time was about to come. I got her onto the bed and convinced her to change her shirt into the gown. The anesthesiologist came in with a syringe and extension so we could administer a new cocktail of drugs in her tube. At first she covered her button and refused. We gently told her things would be okay and she let the doctor push the drugs into her button. She cried as the medicine began working. I hugged her and held her tight kissing her and whispering that everything would be okay. The doctor came in with Gage’s update and I knew it was go time. I released Tinleigh to find she had fallen to sleep. The nurse started to move the bed and Tinleigh didn’t flinch. We wheeled her down the hall and for the first time ever Tinleigh slept during this process. I felt relief coming over me seeing this new drug cocktail was working. They pushed her into the OR, placed the laughing gas mask on her face and began prepping her arm for her IV. Her little eyed popped open. My heart sank. She began trying to yell at the doctor. Her words were muffled by the mask. Tears fell from her eyes as I got right down in her face so she could see me. I repeatedly told her she was okay. She was frozen, couldn’t move, but was definitely trying to communicate with us. It seemed like forever but was probably 1 minute before the doctor drew blood then administered the anesthesia. I kissed her on the forehead and left the room.

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When I met her in recovery she opened her eyes and said what happened? I asked her what she remembered. She asked if she fell asleep. I told her she fell asleep in the room before we wheeled her back. She didn’t remember at all. I was so happy! Then the anesthesiologist popped in. He asked how she was. I told him fine and that she doesn’t remember a thing. He then informed me that in all his 26 years, adults and kids, he’s never had anyone be able to form words while on that combination of drugs. I said well, now you’ve met Tinleigh.

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Later in the hotel I recorded Tinleigh telling me that her scope was a piece of cake and she liked the new medicine. Also, that next time she won’t be scared. This I will use before her next scope to remind her everything was okay.

So we now have a bit of confirmation that Tinleigh’s body doesn’t metabolize drugs the way it should. What if in the future she ends up at an emergency room with no one to tell the doctor she needs extra drugs or certain ones to knock her out. I need to discuss this further with an anesthesiologist. Just another task on my list of things to do.

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The next day Gage had a 20 min blood work procedure done. We needed to test his cortisol function. This is because he is on such a high dose of steroids to be able to eat plus for his asthma. The steroids can cause the cortisol to stop being produced.

He passed!

December 10, 2018 Posted by | daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | Leave a comment

Down in the Dumps

20181027_203530.jpg“Why is my life so tough? Am I a bad kid?”

 Wow, that note from Tinleigh blew me away.

Broke my heart.

Scared me.

Made me face a new reality that we must face having a chronic lifelong illness.

It really upset me realizing the older they get it’s probably going to get a lot harder emotionally. I feel like it’s my job to make it all okay.

Tinleigh knows scopes are coming up and she’s anxious. She’s mad. She’s very upset about it. She HATES the IV. She’s a girl that likes to be in control. That comes straight from me. So, I’m certain getting an IV then being put to sleep is so hard for her. She’s not in control of any of it and it’s all happening to her.

Her most recent fit was when she slipped me this piece of paper with her little words. So, we sat on her bed and had a talk. It’s frustrating. We’ve been doing this for SO LONG that you would think something like a scope would be routine for her. Although the timing is routine it’s like a whole new experience to her every time. I reminded her that the last 2 times she told the Doctor that it was a piece of cake when we were all done. She of course argued with me and refused to believe she would say something like that. Then she asked me “Why do we even have to get scoped?”. That stopped me in my tracks. Even though we’ve been doing this since she was a baby she didn’t understand why. She knows the words EoE and anaphylaxis, but the definitions were a muddy mess. Tinleigh didn’t realize they were 2 totally separate issues. I had to re-explain EoE and why we needed scopes. Which of course didn’t make anything better, but now she understands why.

20181128_173519.jpgSince starting Tinleigh on steroids we’ve seen a huge change in her. It’s so ugly. She does just fine at school. She’s her cheery little life is amazing self. At home though, we’re on eggshells to not set her off. Being the strong headed little spirit she is once she goes off the edge it’s a battle. It could be anything from one of the other kids upsetting her to me telling her no. She will argue and fight until she’s blue in the face. She screams and grunts and cries for an hour. It’s not her though, it’s the steroids. She can’t control it. It’s the steroids that wrote that note. What do we do though? She can eat so much right now. She’s so happy about eating. We can’t take it all away.

That note though. As a mom with 3 kids having chronic illness, I wasn’t prepared for that. I thought we were doing pretty good. Having a positive outlook has always been our goal. Maybe it’s going to take more than that. Is there a book for moms on all this? How to handle each phase of life while dealing with chronic illness? I’m not even sure there’s a book with how to deal with phases of life while having “normal” kids.

20181014_215251.jpgGage has been down in the dumps for about a month now. He doesn’t say much, won’t say anything when asked. He just wants to sit in his chair. Nathan, Charlie and I all sense it. He’s quick tempered now. That has never been his personality. We wonder if the high dose of steroids he’s on are affecting him. We know a few friends with EoE that couldn’t do the steroids. They cause them to become angry and turn into little monsters. It’s really a tough call though. We started the steroids so that Gage and Tinleigh could eat. We wanted to make them happy again. However, the steroids could be making them angry. If we take them away, they’ll be back to little to no foods and be very sad again. Do we endure the moodiness and let them eat? Or do we selfishly take away the steroids to see if we get our loving happy kids back? Would they really be happy though?

We meet with our GI this week for scopes. Steroids, anger/depression and options will be our focus topics. I must get things figured out for these two kids. 20181204_193236.jpg

December 9, 2018 Posted by | daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , , , | Leave a comment

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.

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

6 Years In

bottle.jpgTinleigh was diagnosed with eosinophilic esophagitis at age 14 months. She turned 7 this month. I just bought her a new package of bottles to drink her formula from. It hurts my heart. Why have we been in this battle for 6 years? It doesn’t get easier, it just becomes our daily life. It still kills me when she asks for something she can’t have. We still get excited when we find something new she can eat. The highs and lows are so hard on our emotions.

She stared 1st grade this year. It has been absolutely amazing. Tinleigh is surrounded by a group of people that would give her the world to keep her protected. We started allowing her to sit in the cafeteria. The first week I went during lunch and sat with her. It was like watching a bomb to see if it’s going to explode. I think we finally have her airborne reactions under control with medicine. She absolutely loves being in the lunch room. She is isolated at the peanut free table located closest to the exit doors. However, she gets to sit with her best friend who isn’t in her classroom this year. The two of them giggle and chat through the whole lunch period. It’s adorable. You can see the happiness in Tinleigh’s eyes. She’s enjoying life.

Once lunch is over we have the problem of getting 97 sets of hands clean. You can’t exactly expect that many 7 year old’s to wash their hands in 3 minutes and do it with out screwing around and being on time to their next class. Last year the lunch crew would put a package of the brown napkins in water and pass them out as the kids exited. The kids would wipe their hands and move on to their classes. This year Tinleigh’s class and one other have gym following lunch everyday. The chances of food getting to Tinleigh during gym are greater since the kids had just been eating. The school asked for donations of wipes to clean the kids hands. They needed an estimated 17,000 wipes to get through the school year. A note was sent through the community and do you know what? The school had almost 54,000 wipes donated to them. Can you believe that?! A simple note was sent out on social media saying they had a 1st grader with allergies and they needed wipes to help keep her safe. The generosity of different groups and individuals in our area was amazing. Of course we had a few people online that said “she shouldn’t be in school” “wipes aren’t effective” “The mom needs to speak with her allergist” “they should just make the kids wash their hands”. I bit my tongue and kept Tinleigh anonymous, that was tough. 20180914_121050.jpgThe local air med team was going to fly in and deliver some wipes but got called out at the last minute. The fire department made their delivery that same day. It was awesome and very emotional for me which I hid because who cries over donated wipes? This mom!  I did have the school share a thank you letter with all that contributed.

To the thoughtful who donated,

I don’t think there are enough words to express my full gratitude. I am blown away at the help we have received in gathering wipes for the 1st graders to keep my daughter safe.
First, I want to let you know that it was a huge decision for us to even send her to school. We debated keeping her home, but after a lot of praying and weighing the pros and cons we decided to send her. What it came down to was that we can’t keep her in a bubble forever. She must learn how to navigate life herself and be her own advocate. Let me tell you, if you ever met her you would see she is doing an amazing job. She’s not my first allergic child that I’ve sent to school, but she is my most severe. Sending her to school every day is scary, but we know we’ve made the right decision. She thrives at school, it’s where she’s meant to be. The support we have had from the staff at xxxxxx Elementary has been outstanding. I know they truly care for her and her well-being. Their effort to collect wipes tops the cake.
The effort from everyone involved really shows how great a community we live in and reinforces my belief there are good people out there. Seeing a community come together to help a stranger just warms my heart. I will be forever grateful for your donation. When I explained to her what everyone is doing for her she grinned and was so happy that others care for her.
Thank you from the bottom of our hearts for helping keep our daughter safe.
The allergy family at xxxxxx.

20180914_122328.jpg It’s just heart warming to see a community pull together to help. Restores your faith.

20180926_184503.jpgTinleigh has been on steroids since her 90 day elemental diet over the summer. She was scoped at the beginning of August and we made the diet change. Unfortunately, being elemental for 90 days did not clear her of the disease. She still had eosinophils in her esophagus. She is truly in that rare group of kids with this disease. The doctor wanted to move forward and we are hoping to see that steroids will allow her to eat. She is currently eating all fruits and vegetables. We sort of took the let’s go all in and see if steroids even work approach. She also gets to have coconut and cocoa. She’s doing amazingly well. We can actually all have tacos together! They’re all made up of different stuff but it’s one meal we can all do. The only fruit she can’t have are apples because she’s allergic. She finally threw in the towel on beans, they just made her itchy and she felt she’s allergic to them even though she loves them. I’m not going to argue with her.
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20181006_100828.jpgFor Tinleigh’s birthday I made her a mug cake. I did my best to ice it and present it as a “normal” cake. She loved it. We let Tinleigh have her first friend birthday party this year. I was quite nervous knowing we couldn’t do a cake. What would her little friends think? My mom and I came up with a cake made of fruit for them to all have. I also melted enjoy life chocolate chips and drizzled it over strawberries. They thought it was wonderful! They all kept asking for more fruit. Tinleigh thought it was the best birthday ever! Win for mom!

We are coming up on our next trip to Cinci and Tinleigh is incredibly anxious about it. She still fears getting scoped. Her new GI watches as the anesthesiologist and nurse try to calm her and get her knocked out. I am also allowed to be with her until she is asleep now. The GI doctor doesn’t want to scope Tinleigh anymore than we need to. So we’re really hoping these steroids work and we can keep her eating and not have to scope as much these next few years. We’ll let her get a little older and then move forward again. I love that he cares for her well being that much.
20180803_204229.jpgTinleigh still does not let her disease slow her down or get her down. She has her sad moments, but this little girl brightens everyone’s day and makes the most of it. She is definitely LIVING the allergy life.

October 21, 2018 Posted by | LIVING | 7 Comments

The Week Before.

 

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This was how the day went.

The countdown was on until we went to Cincinnati for the kids first visit to the EoE clinic. I’m actually going to back up to a week and a half prior. Tinleigh had a field trip on Wednesday and Layton and I both woke up with a sore throat. I thought it was seasonal allergies kicking in. So off we went for the day with all the kindergarteners. I was only there to make sure Tinleigh stayed safe and hooked her up for her tube feeds. The trip was successful, however Layton and I still had sore throats at the end of the day.

 

Thursday I woke up, still with a sore throat, but now also with a stiff neck. Wings of Hope called me that day to check in and see how everyone was. I told them Gage, Layton and I all seemed to have a cold. They informed me that it would be a bad idea for them to privately fly us because in an unpressurized cabin with congestion we would be in a world of hurt. Luckily, they still came through for us and flew us commercially.

Friday I was the same. Layton seemed to be fine and didn’t complain anymore, still stuffy though. That day Gage had his pre-op physical. About 30 minutes before I needed to go get him from school the nurse called and said he had a sore throat and small fever.  UGH! I was then guessing we both had strep. So I was planning on going into the walk in clinic once Gage was done with his appt. We were both swabbed and we were both negative. We just had some nasty sore throat virus that was going around.

Did you know: if you eat Doritoes you must wait at least an hour before having a rapid strep test done because there’s something in Doritoes that throw the results off. Yes, Gage was eating Doritoes right as the nurse went to swab him, so we had to wait. lol

Saturday I woke up with a common stiff neck and shoulder pain I often get on my right side. This time it was on the left. I took my prescription meds that night thinking it would be gone by morning as usual. Boy was I wrong. I was worse, much worse. I stretched all day and repeated my meds at bedtime. Sunday morning I was in pain. So as Nathan packed up to head to Florida for the week I packed up the kids and we headed to the walk in clinic. A steroid shot and prescription later we headed home.

Monday afternoon I called the doctor asking for a different muscle relaxer than what I had. I needed something that I could take during the day and be able to function because what I had knocks me out.

Wednesday morning I managed to roll out of bed and took all the kids to school. I was in tears from pain. Thank goodness my crew helped me out getting things ready that morning. My shoulder was completely locked up along with my neck. Three of my fingers were numb and I had shooting pains in my armpit and down my arm. Once I had everyone at school I went back to the walk in clinic begging for relief. Luckily it saw the same doctor I had seen on Sunday. He suggested I see his chiropractor and gave me steroids and pain meds.

Wednesday, Thursday and Friday I went to the chiropractor, never again.

Nathan got home Friday night. I put the kids to bed, took a pain pill and managed to pack and get everything ready to go. Saturday morning we had 2 baseball games and then Gage, Layton and I headed to Ohio that afternoon.20180421_160116.jpg

To be continued…..

 

 

May 8, 2018 Posted by | daily life, LIVING | , , , , , | 2 Comments

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