LIVING

With EoE, Allergies, Asthma and a G-Tube

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.

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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

Good, Bad and Ugly

The good : Layton does not have EoE!
The bad: Gage’s steroids are not working as they should be. As I assumed they wouldn’t. So we up the dose, remove a couple high trigger foods and keep going.
The ugly: Tinleigh just had her 5th episode of impaction, cooked elbow macaroni, on her steroids. Looks like she’s getting scoped asap.

May 3, 2017 Posted by | LIVING | Leave a comment

Eating with steroids

As of today

Tinleigh is eating:

squash
banana
potato
coconut
pear
orange
corn – may be cause of belly pain
blueberries
black olives
grapes
She tried the tiniest piece of apple and her throat became itchy

Gage has now added:
squash
buckwheat
grapes
apple
oats
pickle
corn
veganegg
wheat
tomato

April 10, 2017 Posted by | LIVING | Leave a comment

We’re EATING!

It is awesome that Gage and Tinleigh are eating now. As of today Gage has added apple, buckwheat, corn, pickles / cucumber, VeganEgg, squash and oats. Tinleigh is up to banana, corn, squash, potato and pear. Tinleigh tried pickle and coconut but had a reaction to both. When she tried pickle her bottom lip swelled up and with coconut her throat felt funny she told us.

PicsArt_03-13-09.45.23What I completely forgot about was how hard it is to cook for all the people! I try to make fun things for them to eat so they get the full spectrum of foods with what little they have. I’ll tell you what though, it’s tough. Every recipe is 50 different ingredients. The dishes pile high and then it feels like you’re starting all over again.

I have successfully made Gage some buckwheat cornbread. Just to see the smile on his face when he eats it defiantly makes it all worth  the while. He’s also had buckwheat pancakes and buckwheat apple cinnamon muffins. I think he’s in heaven . I tried to make Tinleigh some banana coconut muffins but those bothered her throat. She’s loving corn and we had totally forgotten about corn pasta! Huge hurrah for that. She keeps telling me she is just having the best days of her life because she can eat different foods. Makes my heart smile and break all at the same time.

I’ve found them dried fruits to snack on along with safe fruit leather. Gage can eat crackers and they both have noodles now. It’s all so exciting to them. Potato chips, corn chips and popcorn! Things every kid should be able to enjoy.

20170313_131333On the new news front we had Layton’s allergies tested. She was so cooperative and brave. Poor thing had no idea she was about to be pricked 50 times. She didn’t even cry out. She did hit me twice when it was done though and that’s okay. Lucky for her only 3 things showed up; clam, oyster and flounder. She’s eaten fish sticks and snuck some of Charlie’s shrimp before but never had a reaction. Her testing was so small they said just use caution. Well I don’t think she’s a huge oyster fan so I doubt we’ll have any trouble telling her no. We still plan to scope her in April and see if anything is going on in there.

Tinleigh had a huge reaction to playing with play dough so that’s completely out now. She’s had smaller reactions here and there. Sometimes even played with it and didn’t have a reaction at all. This last one really got her so I told her no more. She wishes play dough was never created.

Tinleigh’s airborne reactions seem to be under control. She did have some freak eye incident a few days ago. Her eyes just swelled up. I have no idea why. We threw her in the shower and gave her some Benadryl and she cleared up. You never know who’s going to react to what here.

What I’m most excited about soon is spring break. We LOVE the beach and the beach loves us. It will be even more awesome that this year we can actually go out to eat. We never do because it’s just too hard to eat in front of them. This year I can pack them food and everyone will get to eat together!

March 13, 2017 Posted by | Gage's allergies, Layton's food exploration, LIVING | , , , , , , , , , , , , | 1 Comment

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