LIVING

With EoE, Allergies, Asthma and a G-Tube

How many ways to eat bananas?

Well, so far so good with the banans.
We’ve become adventurous with them. Nathan sliced some up and made banana chips with our dehydrator.  She didn’t like them at first but has snacked on them on and off.

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At first she said they were too hard. I think since they have sat a while a softened up a bit she can chew them more easily.

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Nathan has also made her fried bananas.

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She claimed to like them but only ate a couple bites. Which, is common for her and Gage to do. We’ll try them again in a few days and see what she thinks then. I’m sure she’s getting banana’d out.

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I’m going to introduce her to squash on Tuesday this week. That’s also the day the boys have allergy testing so they’ll all be trying something new that night. VERY EXCITING!!!!

March 22, 2015 Posted by | LIVING | Leave a comment

Banana Ice Cream

A year or so ago banana ice cream was the rage? Well, Tinleigh finally gets to join the crowd!
Step one: peel a banana

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Step 2: cut it up

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(Step 2-1/2: if you’re 3 you’ll probably want your pieces lined up)

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Step 3: put pieces in a bowl into the freezer

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Step 4: let freeze for 1-2 hours

Step 4-1/2: set a timer so said 3 yr old isn’t asking you every 5 second if they’re done yet.

Step 5: blend up in a blender

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Step 6 : make a 3 yr old very happy

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Its so easy a 3 year old can do it!!

March 20, 2015 Posted by | LIVING | Leave a comment

B.A.N.A.N.A.S.

The look in her eyes was one I had never seen before. As I held Tinleigh on my lap facing me a rush of emotions came over me. I wasn’t sure what my role was at this point. The nurse standing behind me quickly realized I had lost my composure and did her best to try and help our situation. Tinleigh was in such a fight or flight state of mind I don’t think she heard a word the nurse was saying to her. Her eyes then fixated on me again as she lunged her face towards mine once more to try and bite my face. It was the first time I had let any of my kids see me cry for what they were going through. I absolutely couldn’t stop myself. As Tinleigh and I locked eyes I tried so hard to think of a song to sing or the right words to say but nothing would come out. She screamed at the top of her lungs and again tried to bite me in the face. I sobbed. The beast that was in her had strength I didn’t realize she had as she stood right up on my lap. Luckily two more nurses had stepped into the room and assisted in holding her still. We weren’t holding her down, we could only hold her still. Then the nurse said one more, and it was done. We finished 37 skin pricks for allergy testing. It was nothing I had ever expected. My boys have had allergy testing I don’t know how many times. Sure they would whimper and cry a little when they were younger, but I had never seen anything like Tinleigh’s reaction. She was tested at 13 months and hasn’t been tested since then. Even during that round of testing she cried a little and that was it. I held her hands, they administered the test and that was it. I don’t know if it’s her age right now, the fact that she’s been through so much or a combination of the two with the added pain of the skin pricks.
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I pray for the day allergy testing is pain free.
Once the nurse was done and they handed us both tissues we wiped our eyes and made our way into the hallway. They told us to go for a walk. Get out of the room. As we walked down the hallway to go check out their awesome fish tank Tinleigh would let our random screams and attempt to hit me. I had to let her know this was unacceptable. Part of me just wanted to let her hit me as much as she wanted. I squatted down to her level, eye to eye, and told her even though she’s mad at mommy she is not allowed to hit me. She swung again and screamed. It was then I told the nurse following us about how as a baby when she was scoped she would wake up enraged and rip her IV out. We made our way to the fish tank where Tinleigh kept trying to talk as she was still half crying. I couldn’t say or do anything to make her happy. I felt horrible. The nurse then appeared and told me we needed to do Layton’s testing. So I left Tinleigh there with another nurse who didn’t partake in the administering of the test. Once in the room I held Layton on my lap just as I did Tinleigh. I think we were maybe 3 pricks in out of 32 when I just let the tears flow. Layton cried, but nothing close to what Tinleigh and I had just gone through.
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Once Layton was done the nurse brought Tinleigh back in. She was calmer. Calm-er. I blew on her back to relieve the itching. She saw Layton’s back and informed everyone in the room she didn’t want to see it. It was gross. I’m sure to a 3 year old it did look strange and scary. Finally Tinleigh’s 15 minute timer beeped and the nurse measured her welts. That went over just about as well as you can imagine. Not quite as dramatic, but not fun either. Layton’s timer beeped shortly after as well. We were done. DONE. Layton and I wanted to nap, Tinleigh was telling me what toy she was going to pick out at the store. Guess we were going to head to the store next.
As we waited for the doctor to come in and talk about the results it was really all I could do to keep myself from crying. I hate this for my kids. I hate that this is their life. Could we forgo the allergy testing? Yes. But Tinleigh wouldn’t be able to trial new foods. The testing definitely outweighs not being able to eat food. That girl thinks about “eating down her throat” probably 11 of the 12 hours she’s awake each day. I did keep my composure but when the doctor came in I really don’t remember our conversation. Only bits a pieces of it. We’re so lucky she’s completely awesome and wrote everything down for me along with all the testing we did. Somehow I managed to blurt out let’s just do bananas and squash for Tinleigh’s trial. Bananas and Squash? Nathan and I never discussed Tinleigh trialing these two foods next. I was definitely having an off day at this point. Happy to hear this news though Tinleigh could not wait to get to the store. Tinleigh had some allergy blood work done when she was put under for her scope in January. She had a number of things come back very high. She also had more show up positive on her skin prick testing this time around. So her list of Ige allergies seems to be growing, this scare me. Being on a feeding tube yet her allergies are expanding, how is this possible? What will her reactions be if she does come in contact with these foods? I hate allergies.
We covered Layton’s results and our plan is to try and start coconut milk on her to be able to wean from neocate. Layton’s cow’s milk came back negative. Our plan with that is to wait another 6 months, then we will gradually introduce her to cow’s milk. The only thing that came back positive on Layton was cherries. Now, not to get too excited, but it is promising. However, there are EoE kids that don’t have Ige allergies. Time will tell.
The girls and I made it  home and Nathan left for work. He had to stay home with Gage who had started running a fever the day before. I fed everyone and regrouped then we headed out to get Charlie from school. After that was a stop by the pediatricians office for a strep swab on Gage. Side note: we have been in the pediatricians office once a week for the last 2 months. Once Gage’s appointment was done we were off to the grocery.

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This little girl was SO excited to buy some bananas. We were all so excited for her. After we had the bananas in the cart we made our way over to the toy aisle where she picked out a new plush toy from the paw patrol family. I of course got stink from the boys about how they will be expecting a toy next week when they get tested. If they only knew how Tinleigh had reacted earlier during her testing. I assured them I would treat them to something as well. Home we went.

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This smile made everything we had gone through this morning so worth it. She agreed. She was so happy all evening. She ate about 2-1/2 bananas. The second half of the 3rd banana somehow turned into play dough. Which was fine with me. She was happy.

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She inspected the bananas and really checked them out. Asking me what the strings on the banana are. How do you open a banana? Can you peel it all then eat it or do you have to leave it on while you eat it? I will have to check my notes, I don’t remember the last time she ate a banana. So she’ll eat bananas for a week then we’ll try out squash. Once I was home this evening it hit me I had wanted her to trial cocoa this go around so I’m going to ask the allergist when we see her next week.
This evening, I broke out in hives from the stress of the day. It takes a toll on us allergy moms.

March 17, 2015 Posted by | LIVING | 1 Comment

My Baby Turned One

Why is it with each child they seem to get older faster than the others?

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Layton turned one. Her first year has flown by for me. She’s had more adventures than most babies will have. She’s lived in 2 states. Lived in two different houses. Flown 4 times. Stayed on a farm for a month and a half. Drove from the east coast to the midwest. Swam in a pool. Experienced her siblings having anaphylactic reactions. Been to the beach. Has her own home health services. Been in the ocean, loves to eat sand. Experienced huge amounts of snow. She LOVES Mickey Mouse and blueberries. She screams at all animals. All of them. She laughs like a baby woodpecker. She’s almost walking full time now.

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Layton has the best personality and is the happiest little girl. Thank goodness because I don’t have time for a cranky baby. She is still on elemental baby formula. We tried switching her to rice milk but she became very constipated. I don’t think she seems to have any allergies. I do believe she has a prune intolerance. I know what prunes are suppose to do but they effect her immediately and her bottom becomes raw. We have not given her any dairy since she had blood in her stool as a newborn. She has had a bite of a pancake that was made with cows milk and we didn’t see any sort of reaction. That’s promising.
Layton meets with the allergist this week for skin prick testing. Why are we testing her with no signs of reactions? It’s a starting point. By 14 months Tinleighs esophagus was a complete wreck. We don’t want to let things go too long before Layton’s feeling sick. We especially don’t want to see her end up with a feeding tube. So we will start with allergy testing and see what, if anything, comes up. Both of the boys had a large number of foods come up positive and they were eating those things just fine. Then we have Tinleigh who only has 4 things come up positive. I don’t know what statistics are for allergies running in families but I honestly can’t imagine Layton not having any. I pray so hard she doesn’t, but reality is, odds probably aren’t in her favor. If things do come back positive then we’ll discuss what to do with the allergist until we can get her scoped. Our GI doesn’t want to scope Layton until she’s having issues or unless this allergy test comes up with a lot of positives. If Layton’s allergy testing comes back all negative then our hope is to scope her when the other 3 are scoped come June. Some kids with EoE don’t test positive to anything. They don’t have Ige allergies. Which would be wonderful because that’s a scary road.
For now Layton is growing great, healthy and happy. I pray it stays this way for her.

March 15, 2015 Posted by | LIVING | 1 Comment

Feeding tube awareness week

Happy Feeding Tube Awareness Week!tubiesWhen we started this journey in 2010 I never imagined ending up with a tubie, especially not 2!

It’s been tough, it is everyday. What the feeding tube has done for Gage and Tinleigh though is wonderful. They are both growing and thriving like all kids should be. For that reason, I love those little extra buttons on their bellies. Visit back this week while we celebrate life with a feeding tube!tubies2

February 8, 2015 Posted by | LIVING | 2 Comments

This time it was me

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While I was pregnant with Layton I had a few allergic reactions to food. As my pregnancy went on my list grew. I could not eat tree nuts, peanuts, shellfish or fish. Each of these foods had given me some sort of reaction. Nothing that required an epi pen but enough that I knew I needed to stay away from them. Nathan and I joked that I had gotten food allergies through osmosis.
While meeting our new allergist recently I asked her about my experiences.  She said there was a 50/50 chance that I’ll be able to eat those foods again. She told me it isn’t uncommon for pregnancy hormones to do this. She advised me to make an appointment and have some allergy testing done. Instead, I did my own testing at home. I would NEVER advise this to anyone. We’ve introduced foods to the kids enough times in a cautious manner at the allergist office why not do it on myself.
Last night I made Charlie fish tacos for dinner. I broke off a very small corner of his fillet and licked it. I then waited for a period of time and nothing happened. Next I proceeded to take a tiny nibble. When I say tiny, I mean smaller than a half the size of a tylenol pill tiny. I smashed it all around my mouth and swallowed. About a minute passed when my tongue began to itch and it quickly traveled down my throat. My throat then began to feel gunky like I needed to cough, then all the sudden my chest got really tight. Holy crap I’m having a full blown reaction. Wait, am I really? I took a drink of water and realized I wasn’t imagining this. So I immediately took a couple benadryl and called Nathan. I told him how I was feeling and he suggested I take one more benadryl then asked me if I would be able to epi pen myself. What?! It’s not that bad is it? I guess he would know best. I then told Charlie what was going on. I figured I better tell him so if I do have to use the epi he doesn’t freak out. The first words out of his mouth were “you’re joking right?” I shook my head no. He then offered me a hug. So sweet. I then called my parents, I felt like I needed another grown up around. So I spoke to them while I coughed and hacked waiting for the benadryl to kick in. I will admit I was a little nervous. After a while thankfully the benadryl did kick in and all of my symptoms started to lessen. The last thing to go away was the tightening of my chest.
So I now know to completely avoid fish. I’m thinking I may go to the allergist and be tested for tree nuts, peanuts and shellfish. I didn’t enjoy having a reaction and the next one could be worse.
This gave me a whole new perspective on the kids. I feel so horribly bad for them. More so than I already did. That was a scary horrible experience and they’ve all gone through it multiple times. No wonder they never take food from our kitchen without asking. They’ve never expressed fear when trying a new food. Is it because they have all their trust in me that I won’t let something bad happen? Or do they just want other food so badly they are willing to take that risk? Do they even think about having a reaction at all or have they blocked reactions out of their mind?
Guess I better update our family allergy page.
Kara : fish, possible shellfish, tree nuts and peanuts.

January 29, 2015 Posted by | LIVING | 1 Comment

Champions

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Formula, the breakfast of champions.
Have a great weekend!
Get out there and LIVE!!

January 24, 2015 Posted by | LIVING | Leave a comment

Positive note

Here’s something positive to make you ( I really mean me) smile.

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Layton eats a normal baby breakfast of cheerios and banana!
She’s still doing well on food. She has began choking a little,  but I’m trying to remind myself she only has 4 teeth and its not eoe.
Have a great weekend!
Keep on LIVING!

January 23, 2015 Posted by | LIVING | Leave a comment

And so it begins

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Here I go.
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Lunch

January 19, 2015 Posted by | LIVING | Leave a comment

6 Weeks

The last few days have been ok. Gage has asked for popcorn, chips and a few other corn items. I remind him that he can’t have corn anymore. He says okay can I have… and asks for something else. He doesn’t complain. It’s just matter of fact and that’s it. He has asked why corn messed him up and we talk about it. He hasn’t complained or thrown any fits. Tinleigh has also asked for food. We offer her blueberries, olives, Popsicles, candy or to make her snow. Of course she’s sick of all of those things and says no. So we try and distract her by suggesting she play something. It’s going to be a very long 6 weeks.

We’re on day 3.

I feel horribly for them.

I can’t imagine being in their shoes. wpid-20150118_103535.jpg

So, that’s just what I’m going to do, walk in their shoes.

I am going to limit my diet down to just a few foods for the next 6 weeks.

NO cheat days.

NO “just one nibble won’t hurt.”

So here’s my list of foods I CAN eat:

chicken

spinach

yogurt

banana

blueberries

oatmeal

raisins

eggs

green beans

cucumber

peppers

flour tortilla

Cliff bars

Starting tomorrow I will only eat these foods for the next 6 weeks.

I’m hoping to get insight on how my kids might feel mentally about food. How it affects them socially. Just get an overall sense of how it is for them.

Anyone want to join me?

Follow along to see how I’m doing.

Sponsor my 6 weeks by donating to CURED and help my kids get the cure they need.

Help cure them so they can eat more than just a few foods.

Make sure and write in Honor of the Root family when you make your donation. karas camera 1314

January 18, 2015 Posted by | daily life | , , , , , | Leave a comment

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