LIVING

With EoE, Allergies, Asthma and a G-Tube

6 Years In

bottle.jpgTinleigh was diagnosed with eosinophilic esophagitis at age 14 months. She turned 7 this month. I just bought her a new package of bottles to drink her formula from. It hurts my heart. Why have we been in this battle for 6 years? It doesn’t get easier, it just becomes our daily life. It still kills me when she asks for something she can’t have. We still get excited when we find something new she can eat. The highs and lows are so hard on our emotions.

She stared 1st grade this year. It has been absolutely amazing. Tinleigh is surrounded by a group of people that would give her the world to keep her protected. We started allowing her to sit in the cafeteria. The first week I went during lunch and sat with her. It was like watching a bomb to see if it’s going to explode. I think we finally have her airborne reactions under control with medicine. She absolutely loves being in the lunch room. She is isolated at the peanut free table located closest to the exit doors. However, she gets to sit with her best friend who isn’t in her classroom this year. The two of them giggle and chat through the whole lunch period. It’s adorable. You can see the happiness in Tinleigh’s eyes. She’s enjoying life.

Once lunch is over we have the problem of getting 97 sets of hands clean. You can’t exactly expect that many 7 year old’s to wash their hands in 3 minutes and do it with out screwing around and being on time to their next class. Last year the lunch crew would put a package of the brown napkins in water and pass them out as the kids exited. The kids would wipe their hands and move on to their classes. This year Tinleigh’s class and one other have gym following lunch everyday. The chances of food getting to Tinleigh during gym are greater since the kids had just been eating. The school asked for donations of wipes to clean the kids hands. They needed an estimated 17,000 wipes to get through the school year. A note was sent through the community and do you know what? The school had almost 54,000 wipes donated to them. Can you believe that?! A simple note was sent out on social media saying they had a 1st grader with allergies and they needed wipes to help keep her safe. The generosity of different groups and individuals in our area was amazing. Of course we had a few people online that said “she shouldn’t be in school” “wipes aren’t effective” “The mom needs to speak with her allergist” “they should just make the kids wash their hands”. I bit my tongue and kept Tinleigh anonymous, that was tough. 20180914_121050.jpgThe local air med team was going to fly in and deliver some wipes but got called out at the last minute. The fire department made their delivery that same day. It was awesome and very emotional for me which I hid because who cries over donated wipes? This mom!  I did have the school share a thank you letter with all that contributed.

To the thoughtful who donated,

I don’t think there are enough words to express my full gratitude. I am blown away at the help we have received in gathering wipes for the 1st graders to keep my daughter safe.
First, I want to let you know that it was a huge decision for us to even send her to school. We debated keeping her home, but after a lot of praying and weighing the pros and cons we decided to send her. What it came down to was that we can’t keep her in a bubble forever. She must learn how to navigate life herself and be her own advocate. Let me tell you, if you ever met her you would see she is doing an amazing job. She’s not my first allergic child that I’ve sent to school, but she is my most severe. Sending her to school every day is scary, but we know we’ve made the right decision. She thrives at school, it’s where she’s meant to be. The support we have had from the staff at xxxxxx Elementary has been outstanding. I know they truly care for her and her well-being. Their effort to collect wipes tops the cake.
The effort from everyone involved really shows how great a community we live in and reinforces my belief there are good people out there. Seeing a community come together to help a stranger just warms my heart. I will be forever grateful for your donation. When I explained to her what everyone is doing for her she grinned and was so happy that others care for her.
Thank you from the bottom of our hearts for helping keep our daughter safe.
The allergy family at xxxxxx.

20180914_122328.jpg It’s just heart warming to see a community pull together to help. Restores your faith.

20180926_184503.jpgTinleigh has been on steroids since her 90 day elemental diet over the summer. She was scoped at the beginning of August and we made the diet change. Unfortunately, being elemental for 90 days did not clear her of the disease. She still had eosinophils in her esophagus. She is truly in that rare group of kids with this disease. The doctor wanted to move forward and we are hoping to see that steroids will allow her to eat. She is currently eating all fruits and vegetables. We sort of took the let’s go all in and see if steroids even work approach. She also gets to have coconut and cocoa. She’s doing amazingly well. We can actually all have tacos together! They’re all made up of different stuff but it’s one meal we can all do. The only fruit she can’t have are apples because she’s allergic. She finally threw in the towel on beans, they just made her itchy and she felt she’s allergic to them even though she loves them. I’m not going to argue with her.
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20181006_100828.jpgFor Tinleigh’s birthday I made her a mug cake. I did my best to ice it and present it as a “normal” cake. She loved it. We let Tinleigh have her first friend birthday party this year. I was quite nervous knowing we couldn’t do a cake. What would her little friends think? My mom and I came up with a cake made of fruit for them to all have. I also melted enjoy life chocolate chips and drizzled it over strawberries. They thought it was wonderful! They all kept asking for more fruit. Tinleigh thought it was the best birthday ever! Win for mom!

We are coming up on our next trip to Cinci and Tinleigh is incredibly anxious about it. She still fears getting scoped. Her new GI watches as the anesthesiologist and nurse try to calm her and get her knocked out. I am also allowed to be with her until she is asleep now. The GI doctor doesn’t want to scope Tinleigh anymore than we need to. So we’re really hoping these steroids work and we can keep her eating and not have to scope as much these next few years. We’ll let her get a little older and then move forward again. I love that he cares for her well being that much.
20180803_204229.jpgTinleigh still does not let her disease slow her down or get her down. She has her sad moments, but this little girl brightens everyone’s day and makes the most of it. She is definitely LIVING the allergy life.

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October 21, 2018 Posted by | LIVING | 4 Comments

   

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