LIVING

With EoE, Allergies, Asthma and a G-Tube

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

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

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

Seeing Straight

20180121_120706.pngI was very nervous when I first noticed Tinleigh’s eyes turning outwards. I still don’t 100% understand why, but I’m leaning towards connective tissue disorder to blame. We won’t know for sure until we do genetics testing in August.

20180328_171447.jpgWhen I found an eye doctor that looked past her vision being 20/20 and told me we could try to fix her eyes I felt some relief. They tested Tinleigh’s eyes and came up with her exact diagnosis, intermittent exotropia and oculomotor dysfunction in saccades, and what needed to be done. Although her eyes are 20/20, they can’t work together to focus. Think of holding a book in front of your face, both eyes focus on it. Tineigh’s eyes will focus, then one eye drifts and Tinleigh needs to move the book closer or further away so the eyes will refocus. When you watch her read she constantly is moving the book in and out to keep refocusing.

20180328_172548.jpgI was curious what vision therapy was. Once I saw her do it for the first time it totally made sense. It’s literally a work out for your eyes. If you’ve ever been to physical therapy, you know you work a specific muscle group to fix whatever your problem is. That’s exactly what vision therapy is. We are working Tinleigh’s eye muscles to make them stronger so they can work together as they should. Tinleigh only actually attends therapy once every two weeks. We are then sent home with her own folder and list of exercises. We must do these exercises 5 days a week. They’re short, sort of fun and super easy. The first few times she did get a headache but those have stopped.

Will it work? We hope so. We were told that she may do great and be done in a few months. It just depends on how her eyes react to treatment. It does happen that as they grown, she could have a growth spurt and may have problems again. We would just repeat therapy. Worst case scenario if her eyes continue to stray outward and she has troubles with reading and school work then we would be facing eye surgery. I don’t think it will come to that though.

 

April 1, 2018 Posted by | daily life, LIVING, Tinleigh's allergies | , , , , , , , | 1 Comment

Va·ca·tion

The Oxford Dictionary defines vacation as:
NOUN

  1. An extended period of recreation, especially one spent away from home or in traveling.

I define a vacation as a time to escape the reality of our daily life. The allergic reactions, sickness, doctor appointments, limbs sliding out of place, strange rashes, making 50 meals a day and school.
A girl can dream right?
As the week grew closer for spring break I was getting super excited. I envisioned myself of the beach, the kids playing and everything else magically disappearing.
What actually happened…
We’re going to start 5 days before. I began packing. I had a free weekend day with no baseball and the house was clean. So I was going to tackle the long list of what needed to go. Nathan and my mom both laughed at me when I said I was going to get it knocked out. My response “Hey, you never know what my week is going to bring”. The first half of the week went surprisingly smooth with only one doctor appointment.
Thursday morning I woke up feeling dizzy. I got up and got the 3 big kids out the door to school. As I got their lunches and feeding tube bags ready I stumbled sideways a few times. It was really strange. I had a lot to do that day, our flight was at 5pm. I would need to pick the kids up around 1:30 to get to the airport an hour and a half away.

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I decided I needed to lay back down a while and see if this dizziness went away. I set my alarm for an hour and went back to sleep. When I got back up the dizziness hadn’t gone away. I tried to start packing some last minute things but I just couldn’t shake it. The room was spinning. Then I started feeling nauseous. I laid down on the couch and the room spun around me. What in the heck was going on? So I called the nurse. Explained I had no time for this and asked how to make it stop. She had me take my blood pressure, which was high, and advised me to go to the ER. I called Nathan home from work and by 11 I was in. After running an EKG, checking blood work and checked my blood pressure lying, sitting and standing nothing came up. The doctor came in and did some neurological tests. Fine. She began asking me about my ears. I told her I have been having ringing in my ear for a year. Ding ding ding, I have vertigo. She gave me some printed out exercises along with some Meclizine and Zofran then sent me on my way by noon. Fastest ER visit ever, they were awesome. Still dizzy and unable to drive Nathan had to take us to the airport. I managed to finish packing and we made it right on time. Good thing I started packing early.
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Once we got to the airport I let the kids pick out candy and a drink because WE WERE ON VACATION!!!!! About 10 minutes before we got the on the plane Layton started coughing, and coughing and coughing and coughing. What the heck? We got on the plane, I quickly wiped everyone’s seat down as the other passengers enjoyed watching my circus get situated, and Layton was still coughing. At this point

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she was constantly coughing. As I’m still trying to figure out what needed to stay in our seats and what needed to go overhead I just automatically grabbed an inhaler and had her take a couple puffs. I will admit, it was not her inhaler because she doesn’t have asthma. I knew though something was definitely wrong and we were getting ready to go on a 3 hour flight. As I got our things into place and buckled myself in I realized she was still coughing, the inhaler did nothing. The door was starting to close so I quickly TOLD the flight attendant I had to get some Benadryl out of the overhead compartment. I gave Layton a hefty dose and with in 10 minutes she was fine. This only leaves me to believe Layton is allergic to starburst. This was not a good start to our vacation.
Upon arrival of my parents place, in the dark, Charlie found a baby lobster in the first 5 minutes on the “quick look at the beach”. I love him.

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The next day we did our typical morning walk on the beach. Followed by lunch then swimming. That evening we went to dinner. Charlie ordered the alligator nuggets and fries. Gage was able to eat the bread on the table and got some butter noodles. The head chef told me they had disposable aluminum pans and they were able to broil Tinleigh some Mahi-Mahi. Layton had fries I think. About 15 minutes after sitting down and getting our drinks Tinleigh says to me, my throat is tight and it’s hard to breath. I took a deep breath, looked around the table gathered my thoughts along with the emergency bag and we headed outside for fresh air. Her airborne allergies followed us to vacation. Apparently they didn’t get the memo. Luckily the place we were at had vibrant Adirondack chairs all over out front for people to hang out in while waiting on a table. We were about to make this our seats for the duration of dinner. I gave Tinleigh her inhaler and mom brought our meals out. Once Tinleigh felt better I let her take a nibble of her Mahi. Unfortunately, it made her throat itchy. As we waited for the others to finish Charlie popped out to show me he had lost a tooth while eating his alligator. Did you know the vacation tooth fairy brings $5? I took my dinner home in a box, the whole situation made me lose my appetite.

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That night while sleeping Layton woke up itching like crazy. To the point I had to get up and give her Benadryl. The next morning she had a rash/ hives down her arms, on her face and all over her torso. What the heck? Sunburn? The pool water? Suntan lotion?

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Her face and arms were bright red. Was it sun poisoning? We went to the store and bought her a long sleeve suit and hat. We got to do the pirate ship that day and we kept her in the shade as much as we could. The itchiness persisted through the next day. So we kept her out of the sun altogether. Still not 100% what was going on. I thought she was starting to clear up at one point. It all came back again though all over her body and nothing made sense as to what it could be. I kept her on bendryl and slathered her in aquaphor along with hydrocortisone. At this point I contacted our allergist to get her in the loop on what was going on. Once we were home I made an appointment with our pediatrician. For the rash and her blockage in her belly he had felt the week before at her 4 yr appointment. That’s when it hit me. Could it be the miralax I had started a day or two before we left for vacation? At the pediatrician’s office we did an x-ray of her abdomen, which when the doctor touched she screamed in pain. Sure enough the x-ray showed impaction in her whole colon. So now she’s doing a clean out, yet still on miralax and still itchy. So I’m officially ruling out allergic to the sun, suntan lotion and pool water. We head to the allergist office tomorrow morning.

Also, while on vacation Tinleigh became extremely stuffy which I thought was her allergies kicking in. She’s been on allergy medicine for a few months now so that seemed strange. Turns out she actually caught a cold. Her asthma kicked in but we got it under control only needing one nebulizer treatment.

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Then there was the day Charlie, who never complains, comes to me and says his chest hurt. I asked if he hit it while swimming, could have been from using his boogie board in the ocean. He told me no, it was more inside. So I gave him a nebulizer treatment and that fixed it! There was no coughing or wheezing, just pain. Strange.

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Gage was the lucky one on this trip. The only thing that happened to him physically was a tumble with a wave on his boogie board. Mentally going to dinner twice was a bit hard. I made that up with some Hershey kisses. The second time we went to dinner we went to a place that we could stay outside so Tinleigh would be safe. Unfortunately, they didn’t have anything but salad for Gage to eat.

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Though I felt like I will never escape seeing my kids go through life with health issues we had a wonderful time. As Tinleigh said before we left, “The beach is a wonderful place to go. All the fresh air helps me breath better.” I think all the fun we had together, despite our few rough patches, the beach did help us all breath a little easier.

One of the biggest highlights for Gage and Tinleigh was being able to get something from the ice cream truck that came everyday.

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We also had a blast on the pirate ship. No food involved and the kids got to squirt all the adults with squirt guns.
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They learned the basics of shuffle board
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We even had a few serious rounds of Florida-opoly
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We swam and played together
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We all just breathed a little easier.

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And the only thing I forgot to throw in the suitcase in my dizzy state was Tinleigh’s underwear.

March 25, 2018 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , , , | Leave a comment

What’s that smell?

Our weeks and months seem to fly by lately. In an attempt to keep a history for my kids here’s what’s been going on.

We had our air ducts cleaned this month. We hadn’t had it done since we moved in. We live in the woods where spring covers us in yellow pollen like snow. Since everyone has allergies it was something we needed to do. The men came and cleaned and I felt happy having one thing checked off my to do list. Once the men left I noticed a nasty fish smell in the girls room. I went to work searching and cleaning their room thinking there was old food somewhere. After wiping down walls, moving beds and furniture I didn’t find a thing. Until the heat kicked on. Holy smokes the fish smell was coming from the vent! It was strong too. I called the air duct guy and told him. He found it odd but would return the next morning. I got to thinking and wondered what in the world would cause a fish smell after the air ducts were cleaned, so of course I googled it. Well low and behold I wasn’t the only person this had happened too. The first website I came across led me to believe that even though it seemed like the smell was coming from the vent, it may actually be coming from burning electrical wires near by. It may even be coming from our electrical panel. This set me into a panic. I quickly checked out a few other search results and they all said it was electrical. I immediately called an electrician and explained the situation to him along with the websites I had read. He sent a couple guys out that afternoon to inspect the house. They found nothing. NOTHING.

That night I went to bed half in fear they had missed it and our house would burn down in the middle of the night. A bit drastic, but after reading so many other people sharing that their fish smell was electrical, I was still on edge until we knew exactly what the cause was. The next morning the vent men arrived back. I kicked the heat on so they could get a good whiff of the smell. They were baffled. They went to work on two vents that ran along the front of the house. About 10 minutes into it the owner approached me in the kitchen holding his hands out. He said he had found the problem. It appeared to be grapes, very very old grapes. Even better, they were purple. I don’t know the last time I bought purple grapes because my kids don’t like them. Plus Layton’s bed has been positioned slightly over the vent for the last year and the girls have no access to it. So our best guess is these grapes were dying peacefully in that air duct for more than a year. When the cleaners had sprayed their sanitizer through the vents it brought the grapes back to life. The goo the grapes were sitting in was rock hard and the grapes were almost cemented to the vent. So the vacuum they used was unable to suck them out. He asked me if I wanted to smell them to make sure that was what I was smelling. I did, and then I almost puked.

So the big lesson here kids is DON’T PUT GRAPES IN THE VENTS! They will someday come back to haunt you, and not only that, but also make you believe you’re house is about to burn down due to an unforeseen electrical problem.

January 29, 2018 Posted by | daily life, LIVING | , , , , , | Leave a comment

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