A cute picture of Tinleigh at Laytons high chair. What you don’t get is the whole story, another example of how tough it is. Tinleigh wants so much to help her baby sister eat. She wants to dip the fries in ketchup and feed them to Layton. Tinleigh hasn’t dipped her own fries in ketchup in who knows how long. Doing it for Layton is fun and the closest she’ll get to doing it for, probably, a long time. I can’t let her touch them though in fear of a reaction. So instead I have to tell her to back up and not touch. Which makes Tinleigh sad because she just wants to help.
We scheduled all four kids to be scoped on the same day. Our crew filled the 4 spots the hospital would do that day.
The night before we made the 3 hour drive to the hotel. We set up a formula bar.Fed everyone a snack and attempted to settle in for the night. Layton luckily went right to sleep in her pack’n’play. Tinleigh slept with mom and I. Nathan and the boys took the pull out couch. I think Nathan got the short end of the stick as I noticed Gage basically slept on top of him all night.
We had to get up bright and early. I tried to keep track of the times things happened and do a blog post that way, it ended up too crazy for me to keep going back to log things in.
Here’s as far as I got
4:30am up and at em
4:37 i put my makeup on by the light of the microwave
4:45 mom broke her diamond necklace in the dark hotel room and the diamond flew off
5:00 woke up kids
5:15 found missing diamond
5:30 headed to hospital
5:50 checked in all 4 kids
6:20 got called back to our room
7:15 Layton got loopy meds
7:35 Layton went back
8:05 Tinleigh got loopy meds
8:10 Laytons done
Tinleigh went back
Gage got meds
9:07 Gage went back
After this I wasn’t able to keep a log. Once Gage went back Layton came out. Mom and I headed down to be with her and could hear her yelling as we rounded the corner. I knew I had another little Tinleigh on my hands. We walked into her curtain area where one of the nurses was trying to hold her as she screamed and tried to wiggle away. She was fired up. I noticed something in her mouth. I quickly asked what it was. The nurse said a goldfish cracker. WHAT?! I said don’t those have dairy in them? I don’t usually buy them because my other kids are allergic to them. The nurse looked at me and said no it’s just wheat. We scooped the cracker out of her mouth anyways, they handed her to me and then they all left. I grabbed the bag of crackers and sure enough there’s milk in the crackers. I looked down at Layton and right there around her ankle is her little allergy bracelet with one work on it: MILK. I was pissed and nervous all at the same time. I was trying to calm her down, watch for any signs of a reaction and trying to figure out in my head how to handle this situation with the nurses. Her regular nurse came in and I told her in a calm manner the crackers do have milk in them. I then told her if this would have been Tinleigh she would be having an anaphylactic reaction. The nurse went and said something to the pacu nurses about their mistake. I left it at that. Luckily Layton was fine. I called the patient advocate line the next day and took care of the situation. I then asked the nurse for a glucose bottle for Layton in hopes it would calm her. That’s what always worked for Tinleigh. Sure enough it worked for Layton as well. Layton didn’t like the heart monitors, her IV or the blood pressure cuff. She just wanted it all off. So we keep giving her little bottles of water and turned on the tv. I was able to keep her a little more calm until it was time to unhook her from everything. Once she was finally calm Tinleigh came rolling into our recovery bay. Tinleigh has a history of waking up crazy mad. The doctor now gives her a little something to calm her down. It works like a charm. She woke up happy and mellow this time. She saw Layton’s little bottle and instantly wanted one too. She may be 3-1/2 but if it keeps her happy then so be it. We entertained the girls for a while and then Gage came out. We propped him up in a chair and he was quiet and content. Didn’t want bothered only wanted some sprite. Layton was starting to want to run around by this point. So we found a wagon and took the girls for rides up and down the hall. It was still early in the morning and we were the only ones in the whole recovery area. Finally Charlie came out. We propped him up in a chair as well.They boys sat drinking sprite and watching tv. No one got sick. No one threw a fit, except Layton. It was a good day for scopes. The doctor came and spoke to us once everyone was done. Everything appeared good in each of them. Tinleigh had one little spot that looked like small ulcer so they biopsied it. Other than that all the inflammation was down. We know not to get our hopes up because that doesn’t always mean they’re eosinophil clear but it is a good sign that things could be better. We left the hospital by 12:30. We were all exhausted but it was over, we did it.
Friday afternoon I got a call from the doctor. Results were in. I felt numb. She asked who I wanted first. Layton of course! Guess what Layton scoped clear! She may also start on dairy. I couldn’t believe my ears. I think I’m still in shock. Does this mean she’s cleared for life? No, not really. She is on all food at this point in time and is scoping clear. It could flare in the future. We’ll pray that she doesn’t. Charlie was 4 before he started having issues and he was on a regular diet until that point. Let’s think positive though. Next up were Charlie’s results. He was clear all the way through. There were no more eosinophils in his belly either. We had removed soy and started him on reflux medication. The eosionphils in his lower esophagus were gone also. So we will keep him on the meds and off of soy going forward. Even though he doesn’t show any allergic reactions to soy his skin and blood test for soy are huge. So in this case allergy testing does work for him trying to figure out EoE. Charlie is going to trial beef next. He hasn’t had beef since he was 4 and that was the food that set everything into action for him as far as allergies and EoE go. He can only eat pork and fish right now and really needs another protein. Chicken is a trigger and he keeps testing positive to shellfish so beef it is. Fingers crossed he doesn’t have an allergic reaction.
Gage’s scope was better. All of his inflammation and furrowing were gone. So the removal of corn helped clear things up. However, he was still showing 10/12 eosinophils in some areas. Gage has always had a lower number of eosiophils since having a feeding tube. The highest it’s ever been though is a 9. We don’t want to see these numbers in a steady climb. Cauliflower was the only thing he was trialing. I mentioned to our doctor he has been complaining of his throat burning. So we are going to let Gage keep cauliflower and start him on reflux meds. We are hoping maybe he has some reflux going on and this is why he’s showing low numbers of eosinophils. We will let him take the meds for 2 weeks before letting him start a new trial. His new trial will be broccoli and watermelon. We will scope him at the end of July.
Tinleigh failed her food trial this time around. Although she didn’t have any visual signs of EoE her numbers were 10/20. So we have to remove bananas and squash from her diet. The doctor is letting Tinleigh keep Enjoy Life Chocolate chips because they are just cocoa. We are going to pull these 2 foods from her diet for two weeks then she will trial oranges and sweet potatoes. Tinleigh will get scoped at the same time as Gage.
For both Tinleigh and Gage if they have high numbers at their next scope we will have to dial things back and get them to a clear scope before we can continue to move forwards. So i’m really praying things straighten out for them these next two months.
We’re very happy with how things are going for the kids. A little sad Tinleigh has to take away bananas and squash but she still gets to move forward. It’s all just part of how crazy this disease is.
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.