LIVING

With EoE, Allergies, Asthma and a G-Tube

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.

 

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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

March

It’s March already! How is that even possible? The days have been flying by. We don’t seem to make it through a week with out seeing a doctor of some sort.

charlie.jpgCharlie just finished up his last week of physical therapy for his shoulders. The physical therapist that examined him has connective tissue disorder. She knew exactly what I was talking about when I brought up Ehlors Danlos. She did some flexibility measures on him and said no doubt he has some form of it. The biggest red flag being his shoulders sliding out of place. So now we’re armed with home exercises to continue to strengthen his shoulders up. He’s heading into baseball season now and we hope they stay in place for the whole season. I imagine we’ll be back to the PT department in the future as his hips are just starting to slide out as well.

gage.jpgGage gave us a nice scare a few weeks ago. He came to me and told me his shoulder blade hurt. He was throwing a ball around and I told him I doubt it hurts very much. I felt and poked around a bit to see if there were any bruises. Then I felt a very hard, nonmoving, lump right on his shoulder blade. So off to the doctor we went the next day. The doctor told me there is a definite bump there but he wasn’t too concerned. He said it’s where the muscle and tendon attach to the bone. Because of his rate of growth the bone is over compensating and forming this lump. We are keeping an eye on it and checking it every couple of weeks to watch for growth. We’ll go back to the doctor if we see rapid growth or for a 6 month check up on it, which ever comes first. On a good note he’s gained the 6lbs back he lost! We were having some struggles with hooking up to his feeding tube, he only wanted to eat food. I think letting him see that he wasn’t getting the right nutrition and weight loss helped him to be able to understand just how important that feeding tube is. Also this month Gage’s archery team made it to state finals. Lucky me, I was nominated to be the parent who got to ride along on the 4 hour bus ride. Lucky Gage, he got to ride the bus with his friends and stay safe! Up next, baseball season.

tinleigh.jpgMiss Tinleigh is loving school more that a kid should. Which is a good thing. She’s definitely thriving there. We had her long vision therapy appointment for evaluation on how much and what they will do to help strengthen her eyes and keep them from turning outward. When I had her at her 6 yr old check up the nurse and I both noticed her good eye was turning out as well. She is officially diagnosed with intermittent exotropia and oculomotor dysfunction. Tinleigh is having a rough time with all the colds and viruses right now. I expected her to have a rough year with all the new germs since she’s never been around a lot of other people. She also seems to be having more and more incidents in the evening when we cook dinner. I’ve watched her react to beef, pork and chicken now. Cooked dairy is still very bad for her as well. She now tells us her throat is tight and she becomes more and more stuffy along with coughing and watery eyes. I had started her allergy meds and qvar inhaler a month ago in hopes of building up her system so we could try getting her into the school lunch room towards the end of the school year. That way she may not have to sit in the nurses office during lunch while she’s in the 1st grade. If dinner time at home is going badly I worry so will school lunch. Her ankles have started giving her troubles again just as softball season starts. Time to get back into some at home physical therapy!

layton.jpgLayton is 4! I hate how fast the time is flying by. We had her 6 month check up for her toe walking and orthodics. Though she is staying flat about 80% of the time when she’s barefoot, we now have to work on her ankels. They’re not as strong as they should be because the muscle that runs down the front of the lower leg isn’t strong because of the toe walking. So now her ankles turn inward. We’re awaiting orthodics to call for something new for her. Layton has also been telling me daily she feels like she’s going to puke or she feels like she has guacamole in her throat. This began back in November and is slowly been getting worse. She has eczema down her torso, around her elbows and upper thighs. She’s also been having some bowel issues. We’re trying to clear that out and hoping that’s the cause of nauseousness. Her little cousin Ellie with EoE also has these issues.

Just to touch on Nathan a bit, he’s been in the emergency room. The doctor has discovered he has diverticulitis with a possible addition of Crohn’s disease / IBS. As we learn more about that and how to adjust his already limited diet I fear he faces a feeding tube down the road as well. We pray for now though we can get things under control. He has had 2 bouts of diverticulitis in 1 month already so we need to get things figured out quickly.

On a good note we got the kids into Cincinnati Childrens eosinophilic esophagitis clinic in Ohio. We head there the end of April. The bad thing is they only take 2 new patients a week so that means two trips. After that they will see them all at once if needed. We’re very excited. It’s four days of appointments. First day is scope day. Second day is bone density scan, which they’ve never had, along with behavior medicine. Third day is a tour of their research lab and we meet with the allergist. I’m really hoping to get some better answers for Tinleigh from the allergist while were there. I’ve requested someone that specializes in mast cell and asked for a certain test to be ran on her. They will also be evaluated for connective tissue disorder. The last day we meet back with the GI doctor, find out the results of the scopes and get a game plan together. We may also meet with nutrition.  

Why are we going to Cincinnati? We live in between Denver and Cinci where the top researchers are located. Having family in Ohio that can help us out when we travel just made more sense. Cincinnati does have access to trial drugs which we may be interested in trying down the road. We also want to help with their research in what ever way we can to hurry up and cure all kids with eosinophilic diseases.

The most exciting part about us going to Cincinnati is the phone call I received from Wings of Hope telling me that they would help fly us to and from Ohio for our doctor appointments. Wings of Hope is an aviation nonprofit organization which helps communities worldwide become more self-sufficient through improved health, education, economic opportunity, and food security. It was founded in 1962 in St. Louis, Missouri, and currently conducts operations in 11 countries, including the United States. The organization was nominated for the Nobel Peace Prize in 2011 and 2012, holds a 4-Star rating on Charity Navigator and is a GuideStar Gold Participant. In 2015, 92.3% of the organization’s budget was spent on its program services. We are so beyond lucky that they can help us with our travels. If not then we’re looking at a 10 hour drive one way, plus stops.  Things are definitely falling into place as we make the change to new GI doctors. I am still sort of shocked that Wings of Hope will be able help us with our travels.

March 20, 2018 Posted by | Charlie's allergies, Gage's allergies, Layton's food exploration, 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

Christmas Cookies

When Tinleigh asked me if she had enough foods so we could make Christmas cookies I thought for a quick moment and replied YES! Then she persistently asked me about every 10 minutes all day until we actually made them.

I shuffled my feet all day and procrastinated making them. Then I found a recipe online for eggless sugar cookies. Then I adapted it using her safe flour and dairy free butter. I also used coconut milk instead of cows milk. So these little cookies were wheat free, egg free, dairy free and everything else free.

I mixed the dough in my ninja to make sure it was blended well. 20171209_163253.jpgChilled the dough as the recipe suggested then tried to cut out the shapes.

That didn’t go so well. Cutting them was one thing. 20171209_172327.jpgRemoving them to move them apart was another. 20171209_173430.jpgSo I baked them right as they were.

Luckily they puffed up a bit and didn’t run into each other as I had feared. I mixed up the frosting colors and let the kids get right to it! 20171209_181545.jpgThey were so excited. I’m not sure we have decorated cookies since before Tinleigh was born. We may have in NY but TInleigh wouldn’t have remembered that, she was too young. 20171209_181614.jpgEven though our shapes didn’t turn out perfect no one said a word. They were just so excited about the whole experience I think they would have iced anything I sat down in front of them.20171209_181644.jpg For once Tinleigh didn’t have much to say. She went right to work. They only thing she did say, and made sure the others heard her, was “Guys if it wasn’t for me we wouldn’t be doing this”. She was right. It didn’t cross my mind once to make cookies this year. I had given that up years ago. 20171209_181656.jpgThey were so cute. Each with their own plate of cookies to decorate. They are very different from each other and decorating cookies showed those differences.

Layton’s cookies were not as messy as I had expected. She even tried using different colors on each cookie to make them rainbow cookies. She is definitely my artist. You should see her color! 20171209_183439.jpg

Tinleigh’s cookies were very much like the crafty pictures she creates. Lot’s of details and she wanted to try and use every thing she had available to her. 20171209_183651.jpgGage was done first. His cookies surprised me a bit. He is the messiest one at our house. His cookies were so neatly done. When I offered him sprinkles he said NO WAY! 20171209_182723.jpgLast,, in true Charlie fashion, he was a little bit about the decorating and lot about using a ton of icing. I was just happy he wanted to take part. 20171209_183424.jpgThe kids were done and they all wanted to eat one. Of course I said yes. This is where things took a turn for me. You may not be able to understand. I’ll do my best to explain.

For 7-1/2 years now I have been cooking and baking different things for my kids to eat. Failure rate of baking is high. So I guess the reason I shuffled my feet all day not wanting to make these cookies was because I didn’t want them to fail. I couldn’t cut them out the way I had hoped. The girls actually wanted to take part in that as well but couldn’t because the dough just wasn’t set up enough. Well, it was after it was chilled, but it quickly came to room temperature and was like mush. Then the shapes weren’t exactly as the kids thought they would be, but it was okay. A lot of little things were failing. A failure that I’m way to familiar with happening.

The decorating part went amazingly well. No one fought and they were SO HAPPY! So when it was time for them to taste their creations my excitement level was low. This is where I always get a thumbs down, faces frown and everyone is disappointed. Tonight though, it was different. They all LOVED them! They actually loved them. I didn’t know how to feel. I was drained. You may think I’m crazy, but I told Nathan it’s almost like I’ve been conditioned to allergy baking failure. Time after time baking them something that failed I was feeling that sad feeling through the whole process. It may have also been because we don’t know if we’ll ever get to do this again. Or possibly I felt sad because this was the first time Tinleigh was ever getting to decorate Christmas cookies. So when I saw them actually enjoying the cookies I didn’t know how to feel. I wanted to feel happy, but instead I just felt numb.

Maybe I need to try baking again. Maybe I should just stick with sugar cookies. Since Gage and Tinleigh are eating a bit more currently I should make the best of it for them. Why not, they deserve it.

I wish every allergy and EoE mom best wishes this holiday season with their baking explorations. It’s frustrating, exciting, time consuming and, most importantly, I had forgotten, SO WORHT IT. Just to see their smiling faces, it’s always worth it.

Merry Christmas.

December 9, 2017 Posted by | LIVING, Tinleigh's allergies | 1 Comment

How CURED helped me

As you know I spoke at the CURED 2017 conference last week. It opened my eyes. I knew that we were in our own little bubble world of EoE at my house. What I didn’t realize is that I also had a wall up around that bubble.

I was aware of what I thought CURED did. Attending this conference really brought me back to reality and showed me CURED is so much more.

CURED brought together professionals from all over the globe.

20171025_212054.jpgDo you even realize how amazing that is? Because of CURED doctors from all over the world are able to gather to share and learn about eosinophilic diseases. They are gaining knowledge and that means they are coming closer to a cure.

On Thursday I listened to many doctors and researchers discus different aspects of eosinophilic diseases. What really stuck out to me was hearing others in the profession stand to ask questions when the speaker was done. It made me realize that not everything is known. Doctors are still learning. They were there hoping to hear answers just as I was.

Friday was the same. What really brought me back to reality was hearing just how rare my kids still are. We are under 5% with how extreme their diets are and even a smaller percentage being that we have so many with EoE in our family. It opened my eyes, reminded me that I need to be fighting more for them.

I never realized the amount of research that goes into finding a cure. Do you know? It’s not just about finding a pill. They have to look at environmental factors. Is something triggering the disease to flare? How about genetics? My family has 5 people with EoE, other families have 1. They look at what the cells are doing and why they’re doing it. How food allergies play a roll, including environmental. I could go on and on. All of these different doctors are digging in at every aspect. It’s much, much more than just finding a pill.

Speakers at the conference.

Photo credit :Ting Wen

I left that conference feeling amazing. Just knowing all that is going on to help my kids eat one day. This group of people is really trying. I know this because they came to CURED to share and learn more. The amount of compassion they showed me after I gave my speech really reinforced that. They don’t really know what goes on at home, and I really pray that after hearing my speech it will push them to work harder.

Monday after the conference we visited our GI for an in office check up. I had a lot of questions to ask. Questions I wouldn’t have had if I hadn’t been to the conference. What I realized was that a lot of the information I had gained is still unknown to many doctors. It even came to the point during our appointment that our GI sort of released us. She told me if I wanted to get a 2nd opinion she would understand. If I hadn’t been to the conference that never would have crossed my mind. I was stuck in such a rut with Gage and Tinleigh that I never imagined seeking the advice of another doctor. We’ve done a blood draw on Tinleigh to check her cortisol levels while being on the steroid. Gage is having one as well. Our GI told me that if Tinleigh’s levels are low she really won’t know what to do with Tinleigh at that point. I think it is time to move on.

So we are starting a sort of new adventure. I am now GI doctor hunting. That seems so scary to me. I truly believe our GI cares for us and really goes out of her way for us at times. How will I ever replace that?

I am a believer that everything happens for a reason. The opportunity I had to go to the CURED conference was two-fold. It opened my eyes to move forward and find a new GI that can help my kids come closer to a cure. It also showed me how important CURED really is. CURED does much more than raise money for research. It brings people together in the industry from all over the world that want nothing more than to find a cure. It allows patients and family members to join together in person. They have a chance to hug, cry and feel like they’re not alone. It allows children suffering from Eosinophilic diseases come together to meet others going through the same tough life. Because of CURED I left feeling a renewed hope that seeing my kids tube free in the future will be a reality, not just a dream.

So from the bottom of my heart,

Thank you, Ellyn, for creating CURED and bringing this mom back to life in the fight to help her kids. Thank you Shay, and everyone, that makes the CURED conference possible.

October 26, 2017 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | 2 Comments

CURED 2017

A few short months ago Ellyn Kodroff, CEO of CURED, asked Nathan and I to speak at the upcoming conference in October. We had no plans to go, but something told me I was going to do this.

So Nathan and I went back and forth on making it happen. I had planned to take the kids to Ohio the weekend before to visit family then Nathan would join us in Cincinnati for the conference. Then everything got changed around and it ended up that I would be the only one going. Once I accepted this change, I happily embraced the fact I would have approximately 48 hours kid free.

I watched some of the previous speeches that parents had given at the conferences years before. Nothing was really coming to mind of how I wanted to present our story to a group of doctors, researchers, patients and parents. As the end of September quickly crept up I knew I needed to get busy, Ellyn wanted a copy of my speech as the October calendar rolled over. So one evening I sat down and just went to it. The speech just flowed out and by the time I was done I had 5 pages of what I wanted to share.

There was a problem though, I was only given a 15 minute time slot so I had to trim down this 25 minute long story. That part may have actually been harder than figuring out what to write. Then I had to add a slide show. Once I remembered how to use Power Point, the perfect pictures came to mind so plugging them in was no problem.

Writing the story ended up being no problem, practicing it deemed to be a problem. I could not make it through with out coming to tears. Okay, sobbing. I finally worked up the courage to read it to Nathan. We were both a mess. Day to day I’m really fine. I don’t really ever cry. Once I had our whole story laid out in front of me, all smooshed together in one bucket, it was very hard to face. I’m not sure if it’s the disease and everything the kids have faced. It could be all the crying I have suppressed over the years. I don’t know. Just a few days before the conference I decided to read it to the kids. What was I thinking?! I didn’t read it all because some of it would have been too much for them. What I did read though brought Charlie to tears. He asked me if that’s what it was really like going through all of it. So maybe it’s just that our story is sad.

So off I went to Ohio. I could write a whole blog post on my first time ever renting a car. I’ll save you the details and let you imagine how that went. 20171023_001320.jpg

I made it through Thursday listening to doctors presenting. I noticed that a few did seem a bit nervous. Why not? They’re human too. Though, it really didn’t help me relax any. Friday morning arrived. I was up at 5:30, 4 hours and 15 minutes until I had to speak. I arrived at the conference and found a seat, then a muffin and coffee. I ate a few bites noticing my mouth was already dry as the desert. I decided to get up and head out to meet some people. Maybe that would loosen me up a bit and make me forget about having to present. I met a few moms that I knew only through facebook. It was so exciting. It’s sort of like meeting a celebrity.

I made my way back in to sit down to try and force my breakfast down. As more people came in someone placed their belongings in the seat in front of me. That someone was The Dr Marc Rothenberg, one of the world’s foremost authorities on eosinophilic disorders. Yep, breakfast was over.

As the morning started and the first speaker was announced I was focusing on my breathing. I kept trying to relax. I kept reminding myself how important it was for me to share our story with a sold out room filled with doctors, researchers, pharma, patients and parents. I believe there were 200 people there. 20171022_233920.jpgI recently came across this scripture, it came at just the right time. I saved it as the screen saver on my phone. I think I read it a thousand times that morning before my speech. Maybe this scripture is meant for something much larger, but it definitely helped me that day.

As each speech ended and the time grew closer I really thought my heart was going to jump right out of my chest. I’m pretty certain the guy sitting beside me must have thought I was crazy as I kept taking huge deep breaths trying to calm down. Before I knew it, it was my time to shine. I already had tears in my eyes, my emotions were so high.

I made my way up on the stage, asked the lady who introduced me how to work the clicker for my power point, she showed me then left me to present.

As I opened my mouth the tears started coming. I took another deep breath, and said “Phew! Let’s switch gears for a moment as I share a patients side of things.” Then I went right into it. After thanking all the doctors for coming to share and wanting to learn I thought I was going down. I don’t know how I pulled it together, but I did. I could hear myself talking, I wasn’t rushing and I had magically memorized my speech. I was able to look at the crowd that I had feared and shared my family’s journey with every ounce of my heart. As I clicked through the power point I would glimpse at the pictures on the small screen in front of me and every one reminded me why I was doing this.

When I finally made it to the end I was crying. Getting those last few sentences out was the toughest. But, I did it. All I can remember is that I said thank you. Picking my papers up off the podium is a picture that is burned in my head. I didn’t wait for questions from the audience. I walked off the stage and gave Ellyn the biggest hug. I felt SO good knowing I did it. What I didn’t notice though was that everyone in that room was giving me a standing ovation. WOW! How did I do that with our story? I’ve also been told there wasn’t a dry eye in the room. 20171023_001346.png

So many people approached me and thanked me for sharing afterwards. A few speakers that followed even mentioned me. It was amazing. I have never felt so accomplished. I know I did the right thing by accepting Ellyn’s invitation. I had opened the eyes of the medical professionals. I let them see just a glimpse of life in a family with EoE. I hope I lit a little fire under them.

There was one gentleman, who I didn’t get his name. He approached me and thanked me for sharing. He then told me I am an amazing woman. To handle what my family has gone through and is going through I must be able to handle anything. He told me I am very strong and that I am a super mom.  It was like what all of you, my cheering section, has always told me. You know what? It felt good to hear it again after giving that emotional speech. Like maybe now I accept that title.

Thank you to all of my supporters who cheered me on! This was definitely an experience that isn’t over. I feel it maybe the start of something new.

Stay tuned. I am going to share more on the conference!

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October 23, 2017 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Nathan's allergies, Tinleigh's allergies | , , , , , , , , , | 4 Comments

Making Friends, Accepting Differences

Being different is something I’ve always explained to my kids. Even before we were different. I’ve not only spoke to them about being different, but also about accepting differences.

In fact, when I spoke to Tinleigh’s kindergarten class about her allergies and feeding tube I used the words “being different, and it’s okay” as the main point.

So when I was told a story about Tinleigh asking the school nurse “What’s wrong with her?” I about fell over.

As you read in my last post, Tinleigh spends a lot of time in the nurses office. She gets to meet a lot of the kids at school. One day a little girl in a motorized wheel chair came in. Right in front of her Tinleigh says “What’s wrong with her?”. The nurse quickly shushed Tinleigh and said “Tinleigh, how would you feel if someone came in and asked me what was wrong with you?”. Tinleigh cupped her hands over her mouth and had an “oh my gosh what did I just say moment”. The nurse then introduced the other little girl to Tinleigh and asked the other little girl if she could explain to Tinleigh why she was in a wheel chair. Being non-verbal the other little girl shook her heard yes and smiled intently. The nurse explained to Tinleigh this special little girl isn’t able to walk or talk, but she understands everything people are saying around her. Her motorized chair helps her get around and she has a computer on her chair that helps her communicate. Once the nurse was done explaining to Tinleigh about the little girl Tinleigh stepped up to her, lifted her own shirt showing her, her feeing tube and said “This is what makes me special.”. The little girl held her hand out, Tinleigh placed her hand in hers and the two girls just smiled at each other. Instant friendship.

OH MY HEART!

I wish I would have been there to witness this moment. I was concerned at the start of this story that Tinleigh had forgotten she’s a little different as well. I don’t think Tinleigh intended to sound so rude, I think she was just more curious and didn’t know the correct way to ask. I am glad Tinleigh shared her something special.

I am so sorry to this little girl and her parents that Tinleigh was rude.

I am forever thankful for the nurse correcting Tinleigh and allowing those two little girls to have a moment.

The girls will continue to bump into each other in the nurses office throughout the year. I hope their bond grows stronger.10418453_10206402281322733_6302818484168056288_n

September 24, 2017 Posted by | daily life, LIVING, Tinleigh's allergies | , , , | Leave a comment

Operation Keep Tinleigh Safe

So just how are we keeping Tinleigh safe at school?20170909_121122

Last year at the end of the school year Tinleigh and I were lucky enough to go to the school together for two whole days and shadow a kindergarten class. It was so much fun. We learned different things that may hurt Tinleigh that we hadn’t thought of.

So here is our list of what needs to be done for Tinleigh.

  1. Tinleigh is allowed at anytime to say to any teacher “I don’t feel safe and I AM going to the Nurse’s office.” I wanted to let Tinleigh know that if she’s uncomfortable around anyone or anything that she has a safe place to go. Teachers don’t know Tinleigh yet and something may happen that may not cross their mind as being unsafe for Tinleigh.
  2. Tinleigh does not go to the lunch room except for the end of the day after it’s been cleaned. They serve breakfast in the morning so she can’t go there after drop off before the bell rings. She hangs out in the nurses office until the bell rings. During lunch Tinleigh goes back to the nurses office. Tinleigh doesn’t mind this at all. She loves helping the nurse with tasks and chatting with everyone working in the office. She’s become their daily entertainment.
  3. 20170915_212734Tinleigh’s lunch bag is left in the nurses office. It never gets the chance to be mixed  among the other lunch bags.
  4. After lunch every kindergartener must clean their hands before going to recess.
  5. Tinleigh has a special table in the art room that is wiped down before she enters. They also bought her, her own art supplies that no one else can touch. The art teachers nephew has EoE as well, she gets it.
  6. In computer class Tinleigh’s keyboard is wiped down and she has a specific one she sits at everytime.
  7. For both Gym and recess Tinleigh gets her belly wrapped with an ace bandage to protect her button from getting bumped or pulled out.
  8. Afternoon snack is on the playground. If a child chooses to eat their snack they sit in a special area. They must clean their hands before going to play.
  9. Tinleigh’s teacher contacts me if she ever has a question about letting Tinleigh use anything.
  10. Tinleigh never rides the bus. Nathan drops her off in the morning and I pick her up after school just like we’ve always done with the boys.
  11. In the classroom Tinleigh does not share her supplies with her table. She has a little carrier that she keeps her things in.
  12. Tinleigh wears her feeding tube backpack twice at school for an hour each time. The kids in her class know what it is and have learned not to touch her while she wears it.
  13. The first week of school I went into the class and read the Tubey book to the class. Tinleigh showed them her button and we allowed the kids to ask questions. I just explained how everyone is made different and this is a special way that Tinleigh is different. I love that age, they’re all so accepting to differences.
  14. Before school started the teachers were taught more on allergies and made aware there would be a child with airborne allergies coming to the school.
  15. She is never allowed to drink out of the drinking fountain.

20170821_150218I am somewhat comfortable with Tinleigh being in school. I have never seen a child so excited about her days. The day she got her first library book she came yelling down the car line “MOM, MOM, look! My first library book!” School is definitely Tinleigh’s thing. I am SO glad we made the decision to try and make it work for her. I feel we have some really good rules in place for her safety. Almost everyday I still fear I will get a phone call that something has happened. I still have the same fear with the boys. I don’t think it will ever go away.

I feel so fortunate that we have landed in one of the best school districts. If they weren’t so willing to really sit down and figure things out it never would have worked out. For that I will forever be grateful.

 

September 15, 2017 Posted by | LIVING, Tinleigh's allergies | , , , , , , , , , | 2 Comments

Living

20170814_072418I sent her off into the hands of strangers for 7 hours. Around food, airborne smells and dirty little hands everywhere. She came home to me and said “Mom, do you know what I got today at school? I got a smile.” She was grinning ear to ear because school made her SO happy. She loves it.

Coming to the decision of whether or not to send her has not been easy. How could I send this little girl into a school with so many dangerous allergens surrounding her? I didn’t have as hard of a time with Charlie or Gage because they’re not as allergic as Tinliegh is. Even before we left Ohio for the summer Tinleigh had one last airborne reaction to grilled steak brought into the house.

I have prayed a lot about this decision. God and I have a pretty strong bond. He’s always showing me signs of what to do. He always provides for us when I think we’re at the end of the line. I never have to look too hard, He always guides me.

We stayed in Ohio for the summer at my parents farm. My parents are surrounded by Amish. Near the end of our visit I heard an Amish lady’s buggy struck by a car. I was first to the scene and sat with the Amish lady in a grassy ditch and bean field until help arrived. I’ve done a lot with my kids and had to be brave for them MANY times. This time I had to be brave for someone I didn’t know. When I approached the scene all I could see was buggy parts scattered everywhere. I had to stand there and seriously search for her body. Before I took a step down into the ditch I realized she was right there at my feet. She was dressed all in black. Upon seeing her body just laying there a loud cry was building in my throat and at just that moment I took a deep breath and knew she needed me to be brave for her. I held my tears in and went to her. As I squatted down beside her I noticed grass was stuck to her face. She was bleeding from her nose and coughing up blood. I had never seen anything like this. I could feel such sadness inside me but kept it down and spoke to her that help was coming as I pulled the grass away from her bloody face. She would take a deep breath then a few shallow. I coached her on to keep taking those breaths and that help would arrive soon. I have never felt so helpless in a situation. I couldn’t do anything for her. She was unresponsive, didn’t open her eyes and wasn’t moving at all. Then, I began to pray over her. Words just poured out. I knew that if she could hear me, hearing me ask for God’s help, it may sooth her. Help came and I stepped back from the scene. Even though they life flighted her to the hospital, they were unable to help her.

What does this have to do with Tinleigh going to school? That moment, in the ditch, is one I can never forget. I sat and prayed over someone as they were taking their last breaths. Watching a life taken away. Just like that, in an instant. Life is fast. Since we came into all of these allergies and EoE 7 years ago, I have been teaching my kids that they can still live life to the fullest regardless of the dangers they face with life threatening allergies. If I were to keep Tinleigh at home that’s not living. That’s not what I’ve been teaching them. Tinleigh is so smart, social and craves new experiences. Why should I deprive her of all of that because she’s allergic? I am Tinleigh’s advocate and have spent everyday of her life doing that job. So what’s stopping me from being her advocate at school? I am so scared something will happen to her at school, so scared. How will she ever learn to be her own advocate if I keep her home forever. So I put on my mom boots, marched into her school and trained them on how to keep Tinleigh safe. We’ve learned a few things need to be tweaked. Overall though, it’s working. I know we’re going to have some bad days here and there. Tinleigh has bad allergies days when she’s home with me. It’s unavoidable.20170815_065429.jpg

In my heart, I know we’ve made the right decision. Tinleigh’s smile when I pick her up everyday tells me that. We will let Tinleigh live life to the fullest and do our best to continue to keep her safe in the real world.

She is clothed with strength and dignity, and she laughs without fear of the future.

Proverbs 31:25

 

August 16, 2017 Posted by | LIVING, Tinleigh's allergies | , , , , | 2 Comments

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