Today I want to challenge you. I am going to list what my kids can eat and I challenge you to eat like them for the day or the rest of the week!
1. No cheating, obviously
2. You can’t eat out. You have to pack a lunch and snacks for the day.
3. You still have to cook a regular meal for your family while you eat only these foods. Cooking two different dinners will give you a feel for how it is in our house.
4. If you fail you donate $10 to CURED
Charlie – these are the foods Charlie can not eat.
shellfish beef chicken turkey
peas egg mustard soy sesame
all melon pineapple banana mango
frog legs deer all nuts
Gage – these are the only foods Gage is allowed to eat
rice tapioca cocoa green beans
oranges limes lemons blueberries
olives strawberries cauliflower
Tinleigh – these are the only foods Tinleigh is allowed to eat
olives blueberries enjoy life chocolate chips
For those that are new to our family Gage and Tinleigh also have a feeding tube for their main source of nutrition.
I challenge YOU!
Consider donating $1 to CURED if you succeed in honor of these kids!
The only way we’re going to find a cure is for research to happen.
The only way research can happen is for everyone to donate. Even a dollar. If all of my friends donate a dollar it adds up quickly and every little bit helps!
Here’s our video from last year. EOE
DONATE HERE in one of the kids names! CURED 100% of your donation goes to research.
Do you know what else your $1 or more donation will help.
It will help my kids be feeding tube free.
It will help my kids be able to eat more than 10 foods again.
It will free up my time from cooking to spend more quality time with the kids.
We will be able to travel places with out packing 20 different bags of food and formula.
It will help lower our monthly grocery bill which is over $1000
It will greatly reduce our hospital bills which are ridiculous.
We will have more money and more time to do the things “Normal” families do.
My kids immune systems will be healthier and a basic cold will stay just that, a basic cold.
Our kids will be able to have a family of their own with out being scared they’ll pass on the disease.
You’re $1 or more donation will do more than you realize.
Here we are, in our 6th year of Eosinophilic Disease awareness week. Six years, what a
ride roller coaster.
Gage 18 months, age at diagnosis
I sat last night brainstorming about what I’ll do for the week this year. I really wanted to do something I haven’t done before to bring awareness. I’ve been brainstorming about doing something in the form of a video but really can’t come up with how I want to do it. What kept coming to the front of my mind is my blog. My poor neglected blog. THIS blog is my best way to advocate. So maybe just really getting back into my blog and sharing our experiences will bring awareness. I started this blog with intentions of sharing how it isn’t hard to live with allergies and this disease. How you need to keep a positive outlook on life and not let allergies and EoE hold you back. Truth is, they are holding ME back. Holding me back from advocating. I am so consumed with everyday I have no time to dedicate to my blog. Time to get my priorities straight. How in the world will I get the word out and help find a cure if I’m not doing my part?
Today starts the week off with letting everyone know what EoE is. There are different forms, but our family all carry EoE. We maybe looking at Eosinophilic gastritis in Charlie’s furture. His last scope showed some signs. We’re hoping his scope next week will be clear of them so we’ll keep things positive for now and not include it today.
Tinleigh’s new favorite snack. Thinly sliced yellow squash in the dehydrator. She ate an entire squash for breakfast!!
Up next, banana chips.
Tinleigh is doing great on her squash, banana and enjoy life chocolate chip trial. We’ve even found a baby food pouch she can have. She thinks its wonderful to have such a variety of foods.
Well, so far so good with the banans.
We’ve become adventurous with them. Nathan sliced some up and made banana chips with our dehydrator. She didn’t like them at first but has snacked on them on and off.
At first she said they were too hard. I think since they have sat a while a softened up a bit she can chew them more easily.
Nathan has also made her fried bananas.
She claimed to like them but only ate a couple bites. Which, is common for her and Gage to do. We’ll try them again in a few days and see what she thinks then. I’m sure she’s getting banana’d out.
I’m going to introduce her to squash on Tuesday this week. That’s also the day the boys have allergy testing so they’ll all be trying something new that night. VERY EXCITING!!!!
A year or so ago banana ice cream was the rage? Well, Tinleigh finally gets to join the crowd!
Step one: peel a banana
Step 2: cut it up
(Step 2-1/2: if you’re 3 you’ll probably want your pieces lined up)
Step 3: put pieces in a bowl into the freezer
Step 4: let freeze for 1-2 hours
Step 4-1/2: set a timer so said 3 yr old isn’t asking you every 5 second if they’re done yet.
Step 5: blend up in a blender
Step 6 : make a 3 yr old very happy
Its so easy a 3 year old can do it!!
The look in her eyes was one I had never seen before. As I held Tinleigh on my lap facing me a rush of emotions came over me. I wasn’t sure what my role was at this point. The nurse standing behind me quickly realized I had lost my composure and did her best to try and help our situation. Tinleigh was in such a fight or flight state of mind I don’t think she heard a word the nurse was saying to her. Her eyes then fixated on me again as she lunged her face towards mine once more to try and bite my face. It was the first time I had let any of my kids see me cry for what they were going through. I absolutely couldn’t stop myself. As Tinleigh and I locked eyes I tried so hard to think of a song to sing or the right words to say but nothing would come out. She screamed at the top of her lungs and again tried to bite me in the face. I sobbed. The beast that was in her had strength I didn’t realize she had as she stood right up on my lap. Luckily two more nurses had stepped into the room and assisted in holding her still. We weren’t holding her down, we could only hold her still. Then the nurse said one more, and it was done. We finished 37 skin pricks for allergy testing. It was nothing I had ever expected. My boys have had allergy testing I don’t know how many times. Sure they would whimper and cry a little when they were younger, but I had never seen anything like Tinleigh’s reaction. She was tested at 13 months and hasn’t been tested since then. Even during that round of testing she cried a little and that was it. I held her hands, they administered the test and that was it. I don’t know if it’s her age right now, the fact that she’s been through so much or a combination of the two with the added pain of the skin pricks.
I pray for the day allergy testing is pain free.
Once the nurse was done and they handed us both tissues we wiped our eyes and made our way into the hallway. They told us to go for a walk. Get out of the room. As we walked down the hallway to go check out their awesome fish tank Tinleigh would let our random screams and attempt to hit me. I had to let her know this was unacceptable. Part of me just wanted to let her hit me as much as she wanted. I squatted down to her level, eye to eye, and told her even though she’s mad at mommy she is not allowed to hit me. She swung again and screamed. It was then I told the nurse following us about how as a baby when she was scoped she would wake up enraged and rip her IV out. We made our way to the fish tank where Tinleigh kept trying to talk as she was still half crying. I couldn’t say or do anything to make her happy. I felt horrible. The nurse then appeared and told me we needed to do Layton’s testing. So I left Tinleigh there with another nurse who didn’t partake in the administering of the test. Once in the room I held Layton on my lap just as I did Tinleigh. I think we were maybe 3 pricks in out of 32 when I just let the tears flow. Layton cried, but nothing close to what Tinleigh and I had just gone through.
Once Layton was done the nurse brought Tinleigh back in. She was calmer. Calm-er. I blew on her back to relieve the itching. She saw Layton’s back and informed everyone in the room she didn’t want to see it. It was gross. I’m sure to a 3 year old it did look strange and scary. Finally Tinleigh’s 15 minute timer beeped and the nurse measured her welts. That went over just about as well as you can imagine. Not quite as dramatic, but not fun either. Layton’s timer beeped shortly after as well. We were done. DONE. Layton and I wanted to nap, Tinleigh was telling me what toy she was going to pick out at the store. Guess we were going to head to the store next.
As we waited for the doctor to come in and talk about the results it was really all I could do to keep myself from crying. I hate this for my kids. I hate that this is their life. Could we forgo the allergy testing? Yes. But Tinleigh wouldn’t be able to trial new foods. The testing definitely outweighs not being able to eat food. That girl thinks about “eating down her throat” probably 11 of the 12 hours she’s awake each day. I did keep my composure but when the doctor came in I really don’t remember our conversation. Only bits a pieces of it. We’re so lucky she’s completely awesome and wrote everything down for me along with all the testing we did. Somehow I managed to blurt out let’s just do bananas and squash for Tinleigh’s trial. Bananas and Squash? Nathan and I never discussed Tinleigh trialing these two foods next. I was definitely having an off day at this point. Happy to hear this news though Tinleigh could not wait to get to the store. Tinleigh had some allergy blood work done when she was put under for her scope in January. She had a number of things come back very high. She also had more show up positive on her skin prick testing this time around. So her list of Ige allergies seems to be growing, this scare me. Being on a feeding tube yet her allergies are expanding, how is this possible? What will her reactions be if she does come in contact with these foods? I hate allergies.
We covered Layton’s results and our plan is to try and start coconut milk on her to be able to wean from neocate. Layton’s cow’s milk came back negative. Our plan with that is to wait another 6 months, then we will gradually introduce her to cow’s milk. The only thing that came back positive on Layton was cherries. Now, not to get too excited, but it is promising. However, there are EoE kids that don’t have Ige allergies. Time will tell.
The girls and I made it home and Nathan left for work. He had to stay home with Gage who had started running a fever the day before. I fed everyone and regrouped then we headed out to get Charlie from school. After that was a stop by the pediatricians office for a strep swab on Gage. Side note: we have been in the pediatricians office once a week for the last 2 months. Once Gage’s appointment was done we were off to the grocery.
This little girl was SO excited to buy some bananas. We were all so excited for her. After we had the bananas in the cart we made our way over to the toy aisle where she picked out a new plush toy from the paw patrol family. I of course got stink from the boys about how they will be expecting a toy next week when they get tested. If they only knew how Tinleigh had reacted earlier during her testing. I assured them I would treat them to something as well. Home we went.
This smile made everything we had gone through this morning so worth it. She agreed. She was so happy all evening. She ate about 2-1/2 bananas. The second half of the 3rd banana somehow turned into play dough. Which was fine with me. She was happy.
She inspected the bananas and really checked them out. Asking me what the strings on the banana are. How do you open a banana? Can you peel it all then eat it or do you have to leave it on while you eat it? I will have to check my notes, I don’t remember the last time she ate a banana. So she’ll eat bananas for a week then we’ll try out squash. Once I was home this evening it hit me I had wanted her to trial cocoa this go around so I’m going to ask the allergist when we see her next week.
This evening, I broke out in hives from the stress of the day. It takes a toll on us allergy moms.
My parents invited us to come stay with them for a week in Florida. They’re snow birds. After reminding them I have 4 loud, active, high maintenance kids and making sure they realized what they had just asked, I happily accepted their offer. The school gave the okay for us to go and I booked our flights. We needed a break in a major way.
The days leading to this trip I questioned if I had made the right choice. Sure we were going on vacation but the reality is with 3 EoE kids, 2 with feeding tubes, 3 on special formula and all 4 with anaphylactic food allergies, was this really going to be a vacation for me? That sounds totally selfish of me, but really, I need to relax and get away too. Would this be that big of a break from life? HECK YEAH IT WAS!!!!!
I constantly made lists in my head of things I needed to pack. I had to remember all meds. All of them. Too many what ifs could happen. If I didn’t have the correct medication with us then I know I would kick myself for not being prepared. I packed an entire duffel bag of medications and medical equipment.
Good tip #1 If you are able to, go ahead and ship the formula you will need while you are there.
While the kids and I were going to Florida Nathan had to head out of town for work. So he took one big suitcase and I had the other. I packed the boys clothes together in a duffel bag then the girls and I took up the big suitcase. The problem was, the night before the trip I still had some odds and ends things that wouldn’t fit in either the boys duffel bag or my suitcase. I found a large red bag in our closet I had forgotten about. Luckily everything in the medical duffel bag along with the extra items all fit in the red bag.
The morning of the trip I was up early and felt good about how things were going. Nathan had left the day before so I was going solo trying to get everyone ready. About 15 minutes before we needed to leave I started loading the car. It was then I realized the red bag that had saved my packing dilemma had NO ZIPPER. There was nothing on this bag to close it, nothing. In a panic I began running around the house trying to find something that would solve my problem. Luckily Nathan had left his backpack in our closet. It would have to do. So I quickly dumped and shoved as much stuff as I could back into the medical duffel bag and everything else went into Nathan’s backpack which would now be an extra carry-on item for me. Here’s what we took: a pack in play, a large suitcase, two duffel bags, my huge purse/baby bag, a stuffed book bag, two car seats, 4 kids who also each had their own book bag carry on, they each also had their own lunch bag of food, a formula bag for Gage and Tinleigh and 4 kids. You know what though, we made it! A sweet new friend I recently met drove my car to the airport and dropped us off so I didn’t have the hassle of parking. I think I actually saw the check in lady shudder a little as we approached the counter.
We got to the airport only to learn our plane had been delayed an hour. So we sat there for 2 hours and waited. I really didn’t think about our next flight the entire time we waited. The kids were behaved. They snacked and had formula.
I let Layton crawl everywhere so she would be worn out.
Things were going great. Then the agent announced that if anyone had a connecting flight they have already been booked on the next flight because they would miss their connection. Smack! Wake up Kara, that’s you. Oh Crap! A wave of panic rushed over me. My first thought was I don’t have enough food to last these kids much longer than we needed. I was then already considering letting Gage eat corn chips so Tinleigh could have more formula. It’s like an allergy/tubie moms worst nightmare. I gather the kids to get on the plane and as we hand her our tickets I ask her if we had been put on a different second flight. She pulled up our information and informed me our 5 O’clock flight would be missed and they had put us on an 11pm flight. WHAT!?!?! I asked if I would have access to our luggage because I had some food in there. She said she thought so. That eased my mind a little. As we boarded and I was sitting there it dawned on me I had no extra formula for Gage and Tinleigh. I only had Laytons formula. I then rationalized in my head that it would be okay if Gage and Tinleigh had Laytons elemental formula. I had a plan. I felt a little better.
Our flight went great. Layton fell right to sleep and slept the entire flight.
They made the flight peanut free at my request. We did have some turbulence. The very first few bumps Tinleigh let out a wild west YEE-HAW!! She thought it was a great ride. Innocence.
When we landed I really didn’t know what to do. I had never had a flight be delayed to the point where I missed my connecting flight. So I told the kids they needed to listen and stay close, we were in the Atlanta airport. When we got off the plane I looked for the flight we should have been on. It had taken off 15 minutes ago. I scanned the board for our flight the woman said they put us on. I noticed there was another flight due to take off in 10 minutes. I looked at the kids and said “we’re going to run”. Tinleigh promptly announced she had to pee. I gritted my teeth and we ran into a family restroom. Everyone pee’d and we took off running. We made it to the gate and the last of the people were boarding. I stood at the counter and had the kids look out the window. Layton was strapped to my chest yelling because we were both a sweaty mess. The lady taking tickets asked if I needed help. I asked her if the flight was full and she said yes. I told her I needed more help when she was done. She began calling out a few stand-by names then turned to me. I handed her our papers and told her what had happened. She typed in some stuff and handed back our papers and said she put me on the stand-by list. I didn’t think it would be possible for us to be on that flight. I set Layton free and the boys were becoming concerned about how we were going to make it to Florida. I repeated, I don’t know how many times, that I wasn’t sure when we would get there, but that we would. Just as I was starting to get angry at the kids acting like monkeys the lady behind the counter said “I have 4 seats and will board you now”. WHAT? I asked if our luggage make it? She said it should. She then informed me there were 3 seats together and one alone. I said “Charlie, time to man up”. He was totally game for it. So, my sweaty self with a screaming Layton and the other three boarded the plan. Tinleigh was in front of me with her little owl book bag on. As I quickly spoke with the flight attendant letting her know we needed this to be a peanut free flight, I noticed people were looking at Tinleigh and laughing. She had turned sideways and was side stepping down the aisle afraid she was going to bump people with her bag. It was a great comic relief. We found Charlie’s seat. A middle seat 10 rows in front of me. He sat down and assured me he was going to be just fine. I knew he would be. As I shooed Gage and Tinleigh into our row I quickly stripped Layton’s clothes off. I’m sure people thought I was crazy, but she was so hot and mad I had to do something. So there we were. By the grace of God we made it. I told the flight attendant my son was 10 rows up and asked that he check on him. I was starting to panic. I knew Charlie would be fine, but I didn’t know those people. I needed a visual on Charlie, he was too far from me. A lady across the aisle told me she had 2 boys around the same age and would be more than happy to let Charlie come back and take her seat. Part of me wanted Charlie to experience this, but the momma bear in me wanted him back with me. I finally told the woman I would forever be grateful if she didn’t mind switching. So right after take off they switched seats. Charlie informed me he was having great conversation with the man beside him but the woman didn’t have much to say. I then laughed to myself, that guy would have probably been mentally exhausted by the end of the flight. Next stop, Florida……
I would like to thank Delta airlines. Even though my peanut free requests were last minute, they happily obliged with a smile and kept my kids safe.
Why is it with each child they seem to get older faster than the others?
Layton turned one. Her first year has flown by for me. She’s had more adventures than most babies will have. She’s lived in 2 states. Lived in two different houses. Flown 4 times. Stayed on a farm for a month and a half. Drove from the east coast to the midwest. Swam in a pool. Experienced her siblings having anaphylactic reactions. Been to the beach. Has her own home health services. Been in the ocean, loves to eat sand. Experienced huge amounts of snow. She LOVES Mickey Mouse and blueberries. She screams at all animals. All of them. She laughs like a baby woodpecker. She’s almost walking full time now.
Layton has the best personality and is the happiest little girl. Thank goodness because I don’t have time for a cranky baby. She is still on elemental baby formula. We tried switching her to rice milk but she became very constipated. I don’t think she seems to have any allergies. I do believe she has a prune intolerance. I know what prunes are suppose to do but they effect her immediately and her bottom becomes raw. We have not given her any dairy since she had blood in her stool as a newborn. She has had a bite of a pancake that was made with cows milk and we didn’t see any sort of reaction. That’s promising.
Layton meets with the allergist this week for skin prick testing. Why are we testing her with no signs of reactions? It’s a starting point. By 14 months Tinleighs esophagus was a complete wreck. We don’t want to let things go too long before Layton’s feeling sick. We especially don’t want to see her end up with a feeding tube. So we will start with allergy testing and see what, if anything, comes up. Both of the boys had a large number of foods come up positive and they were eating those things just fine. Then we have Tinleigh who only has 4 things come up positive. I don’t know what statistics are for allergies running in families but I honestly can’t imagine Layton not having any. I pray so hard she doesn’t, but reality is, odds probably aren’t in her favor. If things do come back positive then we’ll discuss what to do with the allergist until we can get her scoped. Our GI doesn’t want to scope Layton until she’s having issues or unless this allergy test comes up with a lot of positives. If Layton’s allergy testing comes back all negative then our hope is to scope her when the other 3 are scoped come June. Some kids with EoE don’t test positive to anything. They don’t have Ige allergies. Which would be wonderful because that’s a scary road.
For now Layton is growing great, healthy and happy. I pray it stays this way for her.
Happy Feeding Tube Awareness Week!When we started this journey in 2010 I never imagined ending up with a tubie, especially not 2!
It’s been tough, it is everyday. What the feeding tube has done for Gage and Tinleigh though is wonderful. They are both growing and thriving like all kids should be. For that reason, I love those little extra buttons on their bellies. Visit back this week while we celebrate life with a feeding tube!