LIVING

With EoE, Allergies, Asthma and a G-Tube

Tinleigh’s one year tubie anniversary!

 

I can’t believe Tinleigh has had her tube for one year.

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It has been rough, I’m not going to lie. Tinleigh is a grazer and loves to eat.

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We have found that we can curb her cravings by grinding up ice in the blender and letting her eat “snow”

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Like Gage she’s sick of all the sugary candy she’s allowed to eat.

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I don’t think she really understands what it means to be full or nauseous. Half way through a feed she’ll complain she’s going to puke so I’ll unhook her then she turns around and says she wants to eat. If she does do a full book bag then she’ll say she wants to eat so I’ll get her something and she’ll take a nibble then be done. So I guess we have to work on explaining those tummy feelings she’s feeling and help her understand what her tummy is really telling her.

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She is now 3 and she understands allergies. She can explain to you that she can’t eat chocolate or she will need an epi pen but Gage’s chocolate won’t make her sick. Although she’s not actually allowed to eat Gage’s chocolate at this point.IMG_0200

She will also explain to you that when she’s 8 she won’t have her button anymore and she can eat all foods. I don’t know where she got this idea but she will go on and on about it. I hope it comes true.DSCN4282

She currently has 2 foods she can eat, blueberries and olives.

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The variety of blueberries isn’t big. You can have fresh, frozen or dried.

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She failed rice and green beans big time.

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We took a 6 month break from scopes this year due to our move and insurance, that’s why she didn’t have the chance to add more.

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She’s spunky as ever, happy and very healthy.

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We learned she carries the strep virus around her button which has caused some problems. When it flares up it causes her pain and always one or more of us end up with strep throat.

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When she got her button I think we went through 3 or 4 rounds of strep and then this fall we have had it twice.

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She’s a typical 3 year old that can do everything your three year old can do.

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She might be a little tougher than your 3 year old though.

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I pray for Tinliegh to get to add a lot more foods over this next year.

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This tube hasn’t slowed her down one bit and has been the best thing for her growth. If I remember correctly she’s gained 10 pounds and grown around 4 inches! Not to mention the CHEEKS!

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January 15, 2015 - Posted by | Tinleigh's allergies

4 Comments »

  1. Way to go Tinleigh! Kara, all of them have gotten so big, nice job! We miss you here in New York!!

    Like

    Comment by Tracy | January 15, 2015 | Reply

  2. Our family will be praying for Tinleigh (and the Gage and Charlie) to be able to add a lot more foods too! She does look very happy and healthy though!:) And of course she’s a tough cookie! You guys are very inspirational to me and our family, our allergies are nothing in comparison (though of course they still suck…) and I just pray that Tinleigh’s right about being tube-free at eight years old!

    All the best from Germany,

    Daniela

    Like

    Comment by Daniela | January 16, 2015 | Reply

  3. I stumbled on your blog, and it’s like reading my past. 😉 My now 13 year old had a feeding tube and many GI appointments. He is a little shorter than most 13 year olds but he doesn’t need a feeding tube anymore, eats everything, doesn’t vomit like he used to & is healthy! You seem like a strong mom who is covering all the bases for your kids! I’m sure you have explored everything, but I thought I’d share, the thing that got my son over the vomiting, and failure to thrive, and being below the 5th percentile was the GAPS Diet. It was difficult at first because he didn’t eat all of the gaps foods and would vomit on soup. We made it through though and he’s so much healthier now! It’s worth looking into if you haven’t. Also, we’ve used GutPro probiotic, Digestive Enzymes by Pure Encapsulations and L-Glutamine for gut healing. Good luck to you and your family!!

    Like

    Comment by Brenda | March 3, 2015 | Reply

    • Does your son have EoE? I have never looked into that diet, heard of it though.

      Like

      Comment by livingtheallergylife | March 9, 2015 | Reply


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