The last few days have been ok. Gage has asked for popcorn, chips and a few other corn items. I remind him that he can’t have corn anymore. He says okay can I have… and asks for something else. He doesn’t complain. It’s just matter of fact and that’s it. He has asked why corn messed him up and we talk about it. He hasn’t complained or thrown any fits. Tinleigh has also asked for food. We offer her blueberries, olives, Popsicles, candy or to make her snow. Of course she’s sick of all of those things and says no. So we try and distract her by suggesting she play something. It’s going to be a very long 6 weeks.
We’re on day 3.
I feel horribly for them.
So, that’s just what I’m going to do, walk in their shoes.
I am going to limit my diet down to just a few foods for the next 6 weeks.
NO cheat days.
NO “just one nibble won’t hurt.”
So here’s my list of foods I CAN eat:
Starting tomorrow I will only eat these foods for the next 6 weeks.
I’m hoping to get insight on how my kids might feel mentally about food. How it affects them socially. Just get an overall sense of how it is for them.
Anyone want to join me?
Follow along to see how I’m doing.
Sponsor my 6 weeks by donating to CURED and help my kids get the cure they need.
Help cure them so they can eat more than just a few foods.
I make 96 ounces of formula each day, not including what Layton drinks. I have made this as simple as possible so that I’m only mixing it 4 times a day. It’s super easy and quick.
Next time I will only have to add water to the line, no measuring.
This batch will last for 2 of Gage’s feeds or one of Gage’s and 2 of Tinleigh’s.
I keep a corner in our kitchen just for the kids supplies and meds. There’s really no sense in hiding it away in cupboards because I’m constantly using it. During bad times the perimeter is lined with prescriptions and breathing treatment meds. This picture is on a good day, just the basics.
I had a great day today. Scrubbed the kitchen. Switched Layton’s wardrobe up a size. Organized the laundry room / mud room. The girls were happy all day, and so was I. Layton discovered her screaming voice. Tinleigh stayed out of daddy’s camo paint. We picked the boys up from school and everyone was in a good mood. Great day all around. We continue with our typical routine for the evening. Boys get a computer turn. They do homework. They eat dinner. Nathan comes home. Total daddy excitement is in the air. They play, shower and eat some more. Typical.
We’re going to back up though to the part where the kids eat. Tonight Gage asked for salmon which he’s been eating since October 2013. I cooked him up a fillet in his butter and served it to him. I then went about my evening as usual. He didn’t say a word, but once Nathan was home I noticed he didn’t finish it and had left the table. Tinleigh had been begging Nathan to eat. He agreed to make her some pancakes and Gage chimed in that he wanted some also. Gage was helping Nathan cook and he asked me if I had fairy godparents what would I wish for. I waved my hands over his body and said I would wish that you don’t have allergies anymore. He replied “and no button too?” I said of course no button! I then noticed his upper lip was red. I took a closer look and asked him if it was itchy. Nathan slightly shook his head yes. Right then, my day turned on a dime. I then noticed a spot on Gage’s chest that had a bump and was all red from him scratching it. Gage didn’t want to but said yes he was itchy, then quickly tried to think of something other than the fish that it could have been from. He told me it was from the corn chips that he had last night. I went for the Benadryl but as I did Gage accidentally burnt his knuckle while helping flip the pancake. Off he went to the bathroom to run water on it. Nathan went in to check on him and I could hear Gage was upset. Nathan returned and sent me in. Poor Gage, his little eyes were all red from crying and he told me his eye itched. We went to the couch and I got some medicine for his little burn. While we sat there he said “Mom, I think I’m allergic to fish” then the tears came. OH THIS SUCKS!!!!! So I held him and tried not to get upset too. It’s been a year that he’s eaten fish. Why now? Why do their little bodies play these cruel games? I tried to be reassuring and told him that sometimes you can be allergic to one certain kind of fish but not other kinds. Which is true. So we’ll have to try a different type in a few weeks. We’ll give his body a chance to relax a little. It’s just so frustrating though, sad too. PAUSE………… (coughing in the distance)
I ran upstairs and Gage was continuously clearing his throat and coughing. I asked what was wrong. He said his throat was gunky. I asked if anything else was wrong and if he felt worse. He said yes. That sudden flash of panic rushed over me. Oh shit he’s having a delayed reaction. It’s been a good 2 hours since he ate the salmon. This is after the dose of Benadryl an hour ago. Okay don’t panic mom (in my head) we’ll just give him some more Benadryl. So I give him another half dose. He keeps coughing and clearing his throat so I ask him some more questions without suggesting anything. Don’t ever ask direct questions like does your throat feel like it’s closing. Let them describe it to you in their own words if they’re old enough. It’s still gunky and a little tight because it’s gunky. Nathan and I have a quick huddle and decide to give him an albuterol nebulizer treatment. Yes, of course I’m still panicking. That’s what a mom does. Nathan assured me that if it was really bothering him he wouldn’t be sitting there calmly playing a video game. He says this from his MANY experiences. I agreed. So I sat through the nebulizer treatment watching him like a hawk. Things seemed to be improving. His actual respritory system wasn’t effected or we would have immediately given him the epi pen. We did the nebulizer as caution, preventative. As for now he’s okay. I’m thinking though we won’t be trying any other type of fish until a long conversation with the allergist or some testing. I’m not willing to take that risk.
Dear Allergies and EoE,
I HATE YOU.
We finally had a day in the 30’s so Nathan took the boys sledding.
So glad I didn’t go I would have had a heart attack.
He took them to a local park, new to us.
Then they found a “better” spot.
They were really catching some air
As Nathan keeps texting me these pictures I’m having a heart attack. Trees, narrow path, ramp at the end, all add up to disaster. Luckily they walked away unscathed. The final trip down Charlie landed a bit too hard and jarred his back a little. They called it quits then. Gage cracked his sled which was a bummer because we had bought the “good ones”. The boys were pretty excited though because they could catch more air than the bigger boys going down that spot.
The cold didn’t effect anyone’s asthma. Gage wore his Benik belt for tubie protection. Fun day!
What do my kids eat for dinner?
Tonight is a good example. I tried to match up what little I could just to make it easy on myself. Tinleigh’s plate is up top: ketchup, blueberries, green beans, pork burger cut up, her special french fries.
Gage: black olives, blueberries, pork burger and green beans. He will get hooked up shortly after to complete his calorie needs. He often says he feels full after a few bites, common in EoE kids.
Charlie: black olives, pickles, green beans, french fries and pork burger.
Tonight’s was easy, I didn’t let any of them give an opinion on what they wanted. 😉
Ten minutes in and Tinleigh has tasted everything. Is now bored and picking her nose. She chews then spits things out. Pretty sure it hurts her to swallow. This is how its been for a few weeks now. This is what the boys finished. Charlie left his pickles. Gage only ate his blueberries and a few green beans. So frustrating. He can finally eat and won’t. Swears he’s full.
I love Gage’s enthusiasm for everything outdoors. Different from Charlie’s constant digging and bug catching. Gage is more of a sportsman. He absolutely loves shooting his bow. I hope we can find some competitions for him this summer. He is strong as an ox and has the strength to pull it back all by himself. Any amount of time Nathan will give him to go shoot, Gage is all over it.
Just another something to do where food allergies don’t get in the way. They do tend to get pretty stuffy and a mess when they go to the woods to hunt, but my boys don’t care about the snot. I just wash them down and give them Benadryl when they get home.
Blogging has been on my mind but not getting done. I’ve been thinking a lot about what has been going on and quite frankly I don’t know how I’m sane.
Since October we’ve had:
6 scopes – three bad, one better, one worse and one a little better but not enough.
3 ER visits – 9 stitches, 102 fever with no walking with an added bonus kid fever while there and once for food impaction
we’ve moved twice
The boys are starting their third school this week. Charlie has been a Fighting Tiger, Purple Eagle and now a Blue Devil.
Gage has had bacon and had it taken away. he’s also trialed rice and now blueberries
Gage and Tinleigh have had skin prick alllergy testing twice and Charlie once.
Tinleigh was diagnosed with EoE
Tinleigh was already off of dairy but we also removed wheat, soy, chicken, beef, beans, potato, apple, fish, shellfish, eggs, tree nuts and peanuts and banana.
We removed Chicken from Charlie’s diet
We had Gage off of 26 foods. He was down to 36 pounds. chicken, turkey, beef, fish, shellfish, tree nuts, peanuts, dairy, wheat, celery, eggs, soy, rice, oats, pea, potato, sweet potato, apple, sesame, corn, mustard, deer, beans, hmmmmm what were those other two????
Gage got a feeding tube.
We celebrated feeding tube awareness week for the first time.
Gage now weighs 43 pounds.
Tinleigh turned one and has only gained two pounds since her one year check up, she’ll be 19 months this week.
We started Tinleigh on drinking Gage’s feeding tube formula mixed with her rice milk.
Gage’s feeding tube formula wasn’t covered by insurance. It cost $40 a can. He drank a can a day. It took two months before we had coverage.
Gage was allergic to our new house and we had to scrub the entire house down before we could complete our move.
It took us one whole week to do our most recent move due to cleaning. During that week half our belongings were in one house while we slept in the other house.
Gage’s feeding tube fell out.
In two months time Nathan used 5 epi pens on himself.
We’ve had asthma flares.
Charlie turned 7
Tinleigh learned to walk.
I’ve had to transfer all mailing addresses twice.
We celebrated Halloween, Christmas and Easter trying to avoid food.
Kids had to have physicals for new school.
I’ve had to find new doctors for everyone.
We had pet sea-monkeys. They died.
I’ve had to find Gage a pre-k twice.
We did Gage’s 3 month tube change at home.
Luckily I only had to pack the house for one of the moves but had to unpack both times.
We had snow
Is this the end of the list? No, I know there’s been “minor” issues here and there also but they don’t stand out in my head. Then there’s the everyday things like laundry, running a household, keeping your kids and husband happy, finding things to cook for your allergic family, making multiple dinners every night so everyone can eat and I have to sleep. So these are the reasons my blog has been lagging. Maybe once this house is unpacked, we just finished the move last weekend, I will be able to get back into a blogging routine. That’s my hope anyways. We have so much going on right now with EoE I want to share!
Day two was by far MY favorite day. My wonderfully supportive good friend Rachel drove her 3 boys two hours to meet us at the zoo! We haven’t seen each other since January of 2011! It was a much-needed get together. What better place to do it than a zoo where the boys could all run, enjoy the animals and burn their energy out.
The weather was perfect and everyone was in a good mood. That’s important on a long zoo day. Especially with 6 kids under 6. Rachel and I were able to catch up while the boys ran. My favorite moment that I actually missed was Charlie and the gorilla. There was a huge old gorilla laying on a box right by the glass. Charlie walked over, stepped up on the ledge and started pounding the glass right by the gorilla’s head. If I would have seen him I probably would have given him an earful. The gorilla took care of it for me. Rachel said that gorilla just reached its long arm out and smacked the glass right at Charlie’s head. Scared the crap out of Charlie and he went flying backwards off the ledge, that’s the part I saw. It makes me laugh just typing it. Charlie learned his lesson. I’m not going to bore you with a ton of animal pictures you’ve seen before at your own zoo.
It was a great day with a great friend and her sweet boys. Much needed. Thank you Rachel!
Oh, duh, food allergy blog what did we eat? I had brought some lunch meat then just a bunch of snack type things for the boys. I did our usual pack up with food bag, medical bag, diaper bag and I think that’s it. It was a little trickier being that I had to pack out of our hotel room and could only use what I had on hand. It worked though, that’s all that matters.
Now for the Cheesecake. Rachel suggested Nathan and I take the boys to the cheesecake factory for dinner. Their menu is huge and we should have no problem feeding them. I text Nathan to find a local one and we had our plans made.
This night I ordered myself a long island iced tea. Oh boy was it yummy and probably 2-3 years since I had, had one. It was not spilled. Rachel was right. They had a great menu with something for everyone. Charlie had a cheese quesadilla, Gage had a bread-less blt and some fruit, Nathan had a pizza and some kind of Asian dumpling appetizer, I had a chipotle chicken pasta dish, Tinleigh had some baby food and french fries. All was
good PERFECT! I couldn’t have been happier, my tea helped that along. We asked them to remove the bread from the table so no one was bent out of shape about not getting to eat it. I even ordered key lime cheesecake to go. I felt a sense of calm knowing everything went so smooth. Thank you Cheesecake Factory!
We went back to the room and then went to swim for a while. The water was freezing but you know kids and water. So we left them freeze for a half hour then headed up for bed. We were all exhausted from the long day so going to sleep was no problem. Then around 5:30 am I woke up SO SICK. Lucky me, I got food poisoning. I knew it was a day too good to be true.
Day 3 – weird science. Stay tuned.
In the midst of all our bad news Nathan was getting ready to head out for a trade show. Why don’t you all come with me he says. Get out of the house and take a break. I checked with the school and that was fine for Charlie to miss the rest of the week. So at 6pm Monday night I packed up.
I am a pro at packing. I can pack for a weekend, week or the entire house in the blink of an eye. Once we were all set we needed a trailer to load everything.
3 duffel bags of clothes
3 kids book bags with things to do
a large cooler
a medium Rubbermaid container with dry food
pack n play
one extra bag for meds, nebulizer and pool things
plus a book bag for me of quick snacks, tablet, camera, a few extra coloring book with crayons and the dvd player with dvds.
The next morning we were on the road for our 9 hour road trip. We all feared the screaming display Tinleigh would put on. She is still a screamer and recently hates to ride around town. I’m not sure if it was the constant motion or if she just sensed she needed to be calm but the stinker only had maybe a few outbursts. The boys didn’t even nap and all was well the entire way.
I had packed ham for the boys with bread, chips, sunflower seeds, Gage’s fruit pouches, Charlie granola bars and baby food for Tinleigh. Eating along the way worked out just fine.
We arrive late in the evening and head down to the hotel restaurant for dinner. We’re sure they have something the boys can eat. The kids menu had grilled chicken for Charlie but no pork for Gage. They do have pork chops on the menu so I ask if they can do a child size and pan fry it.
Waiter: No ma’am but we do have the apple compote butterfly chops.
Me: Ok then cut it in half and pan fry it.
Waiter: Ma’am do you realize they’re $22.
Me: Yes I do, but he can’t eat anything else.
Waiter: Ok, would you like the apple compote on it?
Me: NO, please just cut it in half and pan fry it plain. Steamed broccoli and pineapple on the side.
Waiter: Do you want the apple compote? NO!
Me: I’ll eat the other half of the chop.
Nathan and I then each order a beer. We needed one after a long day on the road. Waiter brings Nathan’s and walks over to hand me mine. Somehow, the big round tray lands on Tinleigh’s head the beer flips off onto the table backwards spraying poor shocked Tineligh in the face and all over the table. I wanted to crawl under the table of chaos. With in 2 minutes they had us up and moved to another table. Poor Tinleigh stunk like a beer and was hysterically crying at the drink guy. I had to take her out.
While Tinleigh and I were out the rolls came. Nathan and I decided that since Gage is getting a tube what’s the harm in a little wheat until it happens. He’s never had an outward reaction on it and he’s even had a clear scope while eating it. We don’t really know if it affects his esophagus or not. So Nathan allowed them each to have a half of a roll. When I returned with Tinleigh the boys were both grinning ear to ear so excited to tell me they ate a roll. I would have never guessed something so common for anyone else going to dinner, would be so exciting to an allergy kid. I of course panicked because we didn’t know what all is in them. I asked, we never did get an answer. Shortly after Gage became extremely gunky, coughing and could barely talk. We gave him Benedryl and it cleared him up. Gage repeated over and over that it wasn’t the roll making him cough, it was his lettuce. Broke my heart. He wanted more roll and was trying to make it OK for himself to have another one.
Going to bed that night was tricky for Tinleigh. She’s fine in the pack n play but not fine with others in the room. Took some screaming and a completely dark room to knock her out.
We all slept in the next morning which was a nice change. Ready to start day two!
Not sure I really realized what an adventure this was going to be.
I think the boys think I’m super mom.
Charlie’s really been buttering me up lately with complements. The other day we were talking about Tinleighs hair color and Charlie asks if she’s half of me and half of Nathan. I tell him yes. He says well I am too right? I said yes and Gage. Then he asks “Well what of you am I? Am I sweat, loving and caring just like you?” Then just last night he says out of no where “Mom do you know what you’re full of?” I half fearfully shook my head thinking he had heard “Full of shit” somewhere. He says “SUNSHINE!” He giggles and hugs me. So he just thinks I’m great, I hope it stays that way.
Now Gage expresses himself a different way. I know he thinks highly of me because I bake everything for him, he thinks I can do anything. I make him his milk. That must be magical to him that I create his milk and Charlie’s comes from a cow. Well tonight he requested that I make him cheese. Nathan quickly informed Gage cheese is made from cows milk and he can’t eat it either. Gage didn’t care for what Nathan had to say. “Just make it mom.”
Guess I better get a cape and super mom shirt. 🙂 This super mom needs to do some mega research for a cheese substitute.
The Daiya cheese has pea protein in it and he can’t have peas. I know he misses dairy products in a huge way. I miss the calories, nutrition, fat and protein he got from dairy. Maybe someday Gage.