LIVING

With EoE, Allergies, Asthma and a G-Tube

Making Friends, Accepting Differences

Being different is something I’ve always explained to my kids. Even before we were different. I’ve not only spoke to them about being different, but also about accepting differences.

In fact, when I spoke to Tinleigh’s kindergarten class about her allergies and feeding tube I used the words “being different, and it’s okay” as the main point.

So when I was told a story about Tinleigh asking the school nurse “What’s wrong with her?” I about fell over.

As you read in my last post, Tinleigh spends a lot of time in the nurses office. She gets to meet a lot of the kids at school. One day a little girl in a motorized wheel chair came in. Right in front of her Tinleigh says “What’s wrong with her?”. The nurse quickly shushed Tinleigh and said “Tinleigh, how would you feel if someone came in and asked me what was wrong with you?”. Tinleigh cupped her hands over her mouth and had an “oh my gosh what did I just say moment”. The nurse then introduced the other little girl to Tinleigh and asked the other little girl if she could explain to Tinleigh why she was in a wheel chair. Being non-verbal the other little girl shook her heard yes and smiled intently. The nurse explained to Tinleigh this special little girl isn’t able to walk or talk, but she understands everything people are saying around her. Her motorized chair helps her get around and she has a computer on her chair that helps her communicate. Once the nurse was done explaining to Tinleigh about the little girl Tinleigh stepped up to her, lifted her own shirt showing her, her feeing tube and said “This is what makes me special.”. The little girl held her hand out, Tinleigh placed her hand in hers and the two girls just smiled at each other. Instant friendship.

OH MY HEART!

I wish I would have been there to witness this moment. I was concerned at the start of this story that Tinleigh had forgotten she’s a little different as well. I don’t think Tinleigh intended to sound so rude, I think she was just more curious and didn’t know the correct way to ask. I am glad Tinleigh shared her something special.

I am so sorry to this little girl and her parents that Tinleigh was rude.

I am forever thankful for the nurse correcting Tinleigh and allowing those two little girls to have a moment.

The girls will continue to bump into each other in the nurses office throughout the year. I hope their bond grows stronger.10418453_10206402281322733_6302818484168056288_n

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September 24, 2017 Posted by | daily life, LIVING, Tinleigh's allergies | , , , | Leave a comment

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.

 

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

The Phone Call

In recent news you may have read about the little girl who died eating a peanut on a dare. http://www.foxnews.com/us/2012/01/12/girl-dies-after-friend-gives-her-peanut-on-playground/  I Immediately had a conversation with Charlie about how to handle a situation like that. His response “I will punch them in the face” I quickly let him know that’s not how to handle it, but I feel a little better knowing I’ve covered this with him.
On Thursdays Gage goes to preschool for 3 hours in the morning. I had Tinleigh down for nap and 10 minutes into my workout when the phone rang. “Hi Kara, this is **** at Gage’s school. I have Gage standing here with me, he’s fine, but his eyes are very puffy and watering. They made pine cone bird feeders this morning with peanut butter and bird seed.” At this point my heart started racing. I immediately asked if he was breathing ok, he was. I told her to give him 2tsp of Benadryl and I would be right there. As I’m heading out the door the phone rings again. This time it’s his teacher. They couldn’t find his Benadryl in his bag. There it sat on my counter right beside the sink, we had used it the night before. I grab it and race to his school 3 min away. I walk into his little room and his back is to me. As he turns around I thought is this my kid?!  His poor little face. His eyes were little slits and water was just pouring out. I immediately give him his medicine and start asking questions. The response I got was “We thought since his disease was more internal it would be ok if he touched the peanut butter.” I  wanted to scream. They also told me he washed his hands right after he was done and they had done this an hour earlier. They said they hadn’t noticed it until chapel. I could tell by how bad it was it didn’t just happen,but instead they weren’t really paying attention to him. I asked Gage if his eyes hurt when he went to gym, he said yes. So it was an immediate reaction. I explained to his teachers and the director that Gage had never eaten a peanut because he tested positive before he was old enough to eat one. I further explained because he hadn’t eaten one before we didn’t know the severity of what his reaction would be. Obviously Gage is pretty allergic to peanuts and it’s more of an allergy than related to his EoE. As we were walking out they were taking snack in to the kids, nutter butters. UGH!  I always pack Gage’s snack so he wouldn’t have eaten the nutter butters, still, why would you feed a group of 3 year olds peanut butter?!
Gage was very embarrassed about how he looked. I drove him right to Nathan’s office to get his opinion if more needed to be done. The whites of his eyes were even swollen. Gage refused to get out of the car so I had daddy come out. We agreed to just keep giving him Benadryl unless he broke out in hives, his eyes got worse or his breathing became effected. Home we went.
I made him a little bed on the couch and let him eat lunch there while watching cartoons. I was almost afraid to feed him anything in fear another allergy would kick up and make things worse. After an hour I gave him another 1/2tsp Benadryl because he wasn’t looking any better. After he ate and another hour passed he was getting tired. Since Tinleigh is loud I thought he would rest better in his own bed. He asked to sleep in mommy’s bed which is something we never do, so I agreed. He went right to sleep and I checked on him every 10 minutes. Even with his eyes closed he looked miserable.

After nap

His teacher did call to check on him that day and sent me a text later in the evening. I just kept repeating that there were to be no more peanuts in the room as Gage could have a bad reaction.
It wasn’t until 36 hours later that Gage looked normal. We had a talk with him that he should never touch peanut butter again. He’s 3 though, if his teacher says do this, he’s probably going to do it even if peanut butter is involved. So we’ll add peanuts to his outward reaction list. I’m so thankful he didn’t try to taste it.
Charlie wanted to know why they didn’t use Sunbutter. I still don’t know why they didn’t check with me first. Gage didn’t look normal until 36 hours after it happened.

The next morning

January 15, 2012 Posted by | Gage's allergies, LIVING | , , , , , , , , | 2 Comments

   

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