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

   

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