LIVING

With EoE, Allergies, Asthma and a G-Tube

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.

 

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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

   

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