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

Good, Bad and Ugly

The good : Layton does not have EoE!
The bad: Gage’s steroids are not working as they should be. As I assumed they wouldn’t. So we up the dose, remove a couple high trigger foods and keep going.
The ugly: Tinleigh just had her 5th episode of impaction, cooked elbow macaroni, on her steroids. Looks like she’s getting scoped asap.

May 3, 2017 Posted by | LIVING | Leave a comment

Eating with steroids

As of today

Tinleigh is eating:

squash
banana
potato
coconut
pear
orange
corn – may be cause of belly pain
blueberries
black olives
grapes
She tried the tiniest piece of apple and her throat became itchy

Gage has now added:
squash
buckwheat
grapes
apple
oats
pickle
corn
veganegg
wheat
tomato

April 10, 2017 Posted by | LIVING | Leave a comment

We’re EATING!

It is awesome that Gage and Tinleigh are eating now. As of today Gage has added apple, buckwheat, corn, pickles / cucumber, VeganEgg, squash and oats. Tinleigh is up to banana, corn, squash, potato and pear. Tinleigh tried pickle and coconut but had a reaction to both. When she tried pickle her bottom lip swelled up and with coconut her throat felt funny she told us.

PicsArt_03-13-09.45.23What I completely forgot about was how hard it is to cook for all the people! I try to make fun things for them to eat so they get the full spectrum of foods with what little they have. I’ll tell you what though, it’s tough. Every recipe is 50 different ingredients. The dishes pile high and then it feels like you’re starting all over again.

I have successfully made Gage some buckwheat cornbread. Just to see the smile on his face when he eats it defiantly makes it all worth  the while. He’s also had buckwheat pancakes and buckwheat apple cinnamon muffins. I think he’s in heaven . I tried to make Tinleigh some banana coconut muffins but those bothered her throat. She’s loving corn and we had totally forgotten about corn pasta! Huge hurrah for that. She keeps telling me she is just having the best days of her life because she can eat different foods. Makes my heart smile and break all at the same time.

I’ve found them dried fruits to snack on along with safe fruit leather. Gage can eat crackers and they both have noodles now. It’s all so exciting to them. Potato chips, corn chips and popcorn! Things every kid should be able to enjoy.

20170313_131333On the new news front we had Layton’s allergies tested. She was so cooperative and brave. Poor thing had no idea she was about to be pricked 50 times. She didn’t even cry out. She did hit me twice when it was done though and that’s okay. Lucky for her only 3 things showed up; clam, oyster and flounder. She’s eaten fish sticks and snuck some of Charlie’s shrimp before but never had a reaction. Her testing was so small they said just use caution. Well I don’t think she’s a huge oyster fan so I doubt we’ll have any trouble telling her no. We still plan to scope her in April and see if anything is going on in there.

Tinleigh had a huge reaction to playing with play dough so that’s completely out now. She’s had smaller reactions here and there. Sometimes even played with it and didn’t have a reaction at all. This last one really got her so I told her no more. She wishes play dough was never created.

Tinleigh’s airborne reactions seem to be under control. She did have some freak eye incident a few days ago. Her eyes just swelled up. I have no idea why. We threw her in the shower and gave her some Benadryl and she cleared up. You never know who’s going to react to what here.

What I’m most excited about soon is spring break. We LOVE the beach and the beach loves us. It will be even more awesome that this year we can actually go out to eat. We never do because it’s just too hard to eat in front of them. This year I can pack them food and everyone will get to eat together!

March 13, 2017 Posted by | Gage's allergies, Layton's food exploration, LIVING | , , , , , , , , , , , , | 1 Comment

Buckwheat, Not Wheat

20170225_130105Gage’s new adventure for the week is buckwheat. You have no idea how excited he is.

Buckwheat isn’t actually related to wheat at all. It’s actually in the rhubarb family. Even though Gage wants to eat wheat while on the steroid I just don’t feel like it’s a good idea. So we’ll give buckwheat a try for a while.

We found cereal, noodles, crackers and groats at the health food store. He is loving it all and is so stoked.

Last week we started a trial on VeganEgg. It’s an eggless substitute for egg made of algae. It stinks like sulfur yet is amazingly egg like. He can actually have scrambled eggs. How awesome, yet strange, is that to see him eating an “egg”? Gage has a very anaphylactic allergy to eggs, this picture is so surreal. 20170218_171801I think VeganEgg is going to be a big changer for him. It will really help in our baking once we get some more ingredients added into his diet. I need to strategically plan it out though.

I’ve tried making him oatmeal cookies.20170218_181333 They’re pretty basic, but I’ve failed. Not once but twice on appearance.20170224_195117 It’s so frustrating. He loved them though. Probably because it’s a “cookie”. He didn’t love the second batch as much as the first batch. That happens. I think we need a better flour. I need to get my hands on some buckwheat flour and see how it does. Anyone got a good oatmeal cookie recipe using: oats, oat flour, sugar, veganegg, tapioca starch, enjoy life chocolate chips, cinnamon, brown sugar and baking soda?

Here though, is why I cringe at the thought of Gage and Tinleigh eating. We’re back to the crazy high grocery bills at the specialty food store. It’s totally worth it though to just see them eating and smiling. 20170225_182407Eighteen items at $75? Plus the$110 I just spent on amazon pantry for them. These will last them a week tops. Phew, mommy better log some more hours for work!

Kitchology – allergy friends and non-allergy friends find some new favorite recipes custom tailored to your diet needs!

February 26, 2017 Posted by | LIVING | 3 Comments

Layton’s Joining

20170222_165417Layton seems to be taking a different route to the allergy world than the other 3 did. She was on neocate as an infant, after that though, we’ve fed her normally.

I’ve always fought her to eat. She hates eating. It’s definitely her least favorite thing to do. Unless it’s dum dum suckers.

Tonight I fed her toasted cheese filled ravioli and spaghetti sauce with mushrooms. About 4 bites in she said no more sauce. She then gobbled the rest right down. It made her gunky and stuffy. Was it too much dairy? Was it the egg in the ravioli? Was it the tomato sauce?

20170222_232959Layton is still covered in these tiny little bumps. It’s eczema. I’ve started giving her daily allergy meds and slathering her in Eucerin cream. It’s still spreading though. She’s even started waking up with welts. Very itchy little welts. As of today she has 2 on her belly, one on her hip and more on her thighs.

I just look at the eczema and welts but I haven’t said it out loud yet. I think I’m waiting on the allergy testing and scope in April. I’m just not ready for one more. It’s already too hard. Maybe the timing of giving Gage and Tinleigh a trial break is just what I needed to be able to get Layton figured out? We’ll see. I’m praying maybe it’s all environmental at best. If she really is joining the crowd hopefully she’s more like Charlie and not part of the “rarer club”.

I will say, as insane as this life we live is, things always fall right into place for me. I guess it’s time for Layton.

February 24, 2017 Posted by | LIVING | , , , , | Leave a comment

Tinleigh’s Complicated

In December the decision was made to remove Tinleigh’s 3 safe foods and scope her to make sure she’s clear when only on the formula. Turns out, she wasn’t clear. In fact, she was worse with no foods than she was at her last scope. Her previous scope with her 3 foods was zero in her mid and 20 in her lower esophagus.  This scope she was 7 in her mid and 30 in her lower. 

tinleighWe know it’s not reflux. Her numbers were even lower when she trialed watermelon 6 months ago. Then they spiked up, then back down and now up again.

Our GI spoke with other doctors and aside from saying “good luck with that one” we are now wondering if Tinleigh is an even rarer bird. Is rarer a word? Tinleigh’s been having airborne reactions. Could those be part of this problem? What if it’s environmental allergies causing her eosinophil counts to stay high? We can’t put her in a bubble.

Our game plan is to test Tinleigh’s environmental allergies and see where that gets us. She’s only ever tested positive to a few environmental things but that was in New York. She hasn’t had those tested since moving here. Is Tinleigh allergic to our new state? Wouldn’t that be just awesome, did you catch the sarcasm there. Will our doctor prescribe a new state for us?

Before we dive into trying to figure out Tinleigh though we’re going to give Tinleigh the same break we’re giving Gage. Tinleigh is going on the same swallowed steroid twice a day. Each week we’ll let her have one need food. As long as she’s not showing symptoms we’ll keep going. She’ll be scoped around the end of April to make sure her dosage amount works for her. She will get to do this for a year or two. Then we’ll go back to figuring her out. So far she’s had squash and all of it’s varieties. This week we’re working on potatoes. She will tell you French fries are amazing. 20170222_224546

I’m really going to enjoy this time with her of letting her eat. It’s almost like introducing food to a baby for the first time, except, it’s a very expressive talkative baby that has a million things to say about the food. 20170219_103708

February 23, 2017 Posted by | LIVING | , , , , , | 1 Comment

The Letter

I’ve been debating on if I should share this letter or not. It’s the one I sent to the school.

I’ve decided that I should share it.

Hopefully it can help someone else.

Holidays are such a fun time for kids. As parents, we want to make them the best memories our kids have.

Imagine though being in your child’s shoes for a day. You’re at a party in your classroom, which you consider safe, and then something appears that could kill you in a matter of minutes. Your little head races as you try to figure out what you should do. You’re questioning why this is happening because you were told you would be in a safe room. It’s a party for your whole class and you’re being singled out, even possibly killed. Thank goodness, your mom is there to save you and remove you from harm.

I am not over exaggerating when I use the word kill. As harsh as it sounds it’s the God’s honest truth. I am referencing the peanuts being in the classroom during the Valentines party. There is a sign on the classroom door that says the room is peanut free zone. There were also letters sent home with in the first weeks of school explaining there is a child in the room with severe peanut allergies. I get it that allergies can be “annoying”. Believe me I know. I have 4 kids and a husband all with lengthy lists of foods they can’t eat. You want to talk about annoying, none of them even have the same food allergies. Why would you bring a known anaphylactic allergen into a classroom a risk a child’s life just so the other kids can have peanuts for their sundaes? I could have suggested many other toppings to use that are just as crunchy and salty as peanuts.

If my son would have stayed in the room while the other kids ate peanuts and gone into an anaphylactic asthmatic reaction how would that have impacted your child? It’s not a pretty scene. It’s happened more than once before. He would have started coughing, then a rash would have overcome his body, his eyes would swell and his voice would have become raspy and probably disappeared altogether. He would have ended up gasping for air between coughs, possibly even vomiting.  If a child would have touched a peanut and then touched his arm it would have set his reaction off and ruined the day for everyone. Especially him. You see though, his day was ruined as soon as he was aware there were peanuts in there. He already doesn’t get to participate in the food part of any social event. This day he also didn’t get to exchange Valentines. He will forever remember his 3rd grade Valentine’s day as the one when he had to leave because someone brought peanuts. I also fear how he’ll do in class the rest of the week as the room has been contaminated.

Today could have ended horribly. I’m so thankful I could be there. It breaks my heart that he already goes through so much in life dealing with food and then we run into situations like this that never should have happened. I am always available to make sure we keep things safe for my son. I’m not sure how it didn’t happen this time.

I am more than happy to answer allergy questions for anyone that isn’t familiar with how allergies work as they’re different for everyone.

Sincerely,

Kara

 

February 22, 2017 Posted by | LIVING | 1 Comment

Four Days

It’s been 4 days since my coffee pot broke. Luckily my new one showed up today. Today was so emotional draining I just knew I couldn’t go another day with out my coffee pot.

Last night I typed up a letter and attached it to an email I sent to the VP at the school. I was expecting her phone call at anytime from the moment I woke up. I was on pins and needles worried about how the call would go. I was also extremely worried about Gage and if he would have reaction in his classroom from something not getting wiped down good enough after the Valentines Day peanut fest 2017.

Today I was asked by a few different people “Why didn’t you say something right then?” and “Why didn’t you have them throw them away and allow Gage to stay?”. I’ve learned that since the time Gage was born my gut instincts with him are typically correct. In that instant my first thought was to get him out of there. So I did. As we walked down the hall I knew that anything that needed to be said didn’t need to happen in front of the class. I also knew Gage was safe by my side.

I called the school nurse first thing to let her know that if Gage came to her itching, coughing or feeling weird that she needed to call me asap. She was so upset by what had happened yesterday. She was in action all morning making sure the right people knew how wrong it was for there to be peanuts in a peanut free classroom.

Finally the VP called me. We discussed what happened, how it happened and what will be done. In the end everyone at the school is going to get a refresher course on allergies. Tomorrow I am going to ask that the line of action for figuring out what to serve at parties be changed. Which may include me becoming more involved at the school which I don’t have time for, however, with my kids life on the line I’ll figure it out. The phone call was a huge relief. The correct actions are being taken and hopefully a situation like this one will never happen again.

Something funny about this whole situation, Gage didn’t even know what an ice cream sundae is. When I told him his class was having ice cream sundaes for the party he asked my why were they waiting until Sunday to eat their ice cream. Poor kid was so confused. How sad is it that he didn’t know that?!

On the home front I also dealt with Tinleigh having an airborne reaction to my eggs I had for breakfast. I forgot her allergy meds at bedtime. I hate to think that one missed dose is all it took but I can’t figure out what else it could have been as far as timing goes.

Miss Layton woke up covered in eczema. It’s been in spots here and there but it really took off last night. She has it all down her thighs, her fore arms, groin and on the sides of her back. I know what’s coming, want to guess? She’s also not been eating much at all, toddler phase or does her throat hurt? I’m holding out until her scope in April unless she gets a lot worse.

I’m emotionally exhausted.

Tomorrow, coffee.

He tends his flock like a shepherd:

He gathers the lambs in his arms and carries them close to his heart;

he gently leads those that have young.

Isaiah 40:11

Come back and I’ll fill you in on Tinleigh’s new adventure in food. tinleigh

 

 

 

February 15, 2017 Posted by | Gage's allergies, LIVING | , | 2 Comments

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