LIVING

With EoE, Allergies, Asthma and a G-Tube

Results

Placing an order for a new super tubie t-shirt $11

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Donating $25 to receive  a tubie friend

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Ordering new feeding tube covers $28x

Putting a feeding tube in TinleighTinleigh-5298-2

HORRIBLE.

Doctor called with the kids results today. Both of the boys passed the fish trial! Gage also passed oranges and black olives. Our next trial with Gage will be cherries, tomatoes and spinach. We’re hoping to throw bacon in there once or twice a week but the doctor is thinking it over. We’ll talk with her next week. Charlie will just stay as he is, off of 13 foods. There really isn’t anything we can add back to his diet that he isn’t truly allergic to.  Neither of the boys will be scoped again until June unless there seems to be some issues in their esophagus.

Tinleigh’s scope was bad. Not as bad as Gage’s right before he got his tube, but she should have been a zero with these last changes we made. She had greater than 50 eosinophils in the upper, mid and lower esophagus. She will go in Monday for a GI test to figure out where her stomach lays in her body. The surgeon and GI doctor are trying to line up their schedules and Tinleigh will get her feeding tube in the next few weeks. Pretty crappy way to start out 2014. However, Tinleigh has been miserable. Screaming in the pantry, always hungry. She’s sick of drinking the elemental formula. Hands me back her cup and tells me “no, yucky”. She doesn’t have much food that she can eat, what she can have she doesn’t want.  She’s lost a few pounds over the last two months. She is a toddler and she needs nutrition not only for her body to grow but her for brain to develop as well. So even though it totally sucks it’s going to be best for her, just like it was for Gage. Yes, I do know how to handle it and I know what to do for her once she gets the button. It’s still very gut wrenching that we actually have to do it. You never want to see your child go through something like this. So it’s very hard for Nathan and I to accept that this is where we are with her. We’re just past a years time that she was even diagnosed. Gage was four when he got his button and aside from pain we really didn’t have many troubles. Tinleigh is feisty and two. We’re going to buy lots of onsies and one piece outfits in hopes that it will keep her from trying to pull it out. It will be hard. Hopefully since she has seen Gage with his and knows about button patches, hooking up and wearing a book bag around she’ll be a little better with accepting it.

We’ll see.

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December 27, 2013 - Posted by | Tinleigh's allergies | , , , , , ,

3 Comments »

  1. So sorry to hear about Tinleigh. I pray every day that they find a cure or a better treatment. Will keep all of you in our prayers.

    Comment by Dianna vandeborne | December 27, 2013 | Reply

  2. Oh no…I am so sorry to hear this. I know you all will make it, but it will be a huge challenge I’m sure. Remember w are here for you all. Sending lots of love and hugs from MO…

    Comment by Jessica | December 28, 2013 | Reply

  3. Well that stinks, but clearly you know what is best for her. She is just adorable and looks so happy. I thought I had read all of your entries, but I obviously missed an important one. Congratulations on your upcoming arrival. Babies are such a blessing. Happy New Year to you and your family. May 2014 bring better answers for all of us.

    Comment by Angie Bulkley | January 1, 2014 | Reply


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