LIVING

With EoE, Allergies, Asthma and a G-Tube

Nothing can hold us back

Let’s play catch-up!

Monday, February 10 

Share your tips for feeding on the go or in public! Where have you tube fed? Talk about the most unexpected places you’ve done tube feedings. 

We have tube fed just about everywhere and I really don’t think it’s odd. It’s just how it is. We use backpacks so no one really knows that the kids are hooked up. Of course Tinleigh’s is tiny and adorable, she gets lots of comments about it. I just smile and say thank you. We feed at stores, in the car, school, the movies, while playing inside and out, at other people’s houses, the zoo, airport, I would say just about anyplace we’ve ever gone. 

Tuesday, February 11 

Show how tube feeders can do what they love to do. Share what obstacles you or your child have overcome!

Sweden-20130622-00214 DSCN2870 DSCN3047Played in the ocean

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Gage

I think the biggest thing Gage had to overcome was how he felt about being hooked up at school. It was really no problem. None of the kids asked him why he wore his backpack during lunch. It was probably more the anticipation of what others would say. Other than that Gage does the same stuff he did prior to the tube. As does Tinleigh so far. Gage has played soccer, basketball, gymnastics, swimming lessons, boogie boarding in the ocean and played like a boy outside all summer long. The tube hasn’t slowed him down a bit.

 Wednesday, February 12 

Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier? 

This one makes me laugh. It seems we constantly have a challenge. I can’t exactly say that anything makes it easier. I am thankful my kids are pretty easy going. I just handle what ever comes our way and they don’t really know any different. I know that our lives aren’t ordinary and all you can do is accept that fact. A normal day to us may seem crazy to anyone else. We don’t know any different though. We don’t dwell on bad days. They come and they go. In the last month we have had g-tube surgery canceled, rescheduled, recovered, developed freak hives and had allergic reactions, had the flu, I had bronchitis, had a tube infection, caught strep and had countless doctor appointments. Oh, and I’m VERY pregnant. I keep things as organized as I can so I can grab and go on a whim. I leave myself notes so I don’t forget anything including feeding times and meds. I still have bills to pay and regular dinners to make just as any other mom does. I clean my house and do laundry. I have a cleaning schedule I try to stick to and I will admit I’m a bit ocd about some things. But I have to be to keep this house running as I need it to. I’m also a wife, and as all marriages go, that takes work too. I just do it, it’s my job. I do know that we have lots of prayers sent our way and tons of support, that definitely helps our journey! Thank you everyone.

 Thursday, February 13 

What are your tube feeding hopes and dreams for you or your child in 2014? What successes do you want to build on? 

For Gage my prayers are that he continues to add foods successfully with clear scopes. I also hope that he will start to eat more. I know he wants to get rid of the tube as soon as he can. I know he would also love to have a taco or hot dog. I pray he continues to stay happy with life and doesn’t take to depression about food as many kids with EoE do.

I want Tinleigh’s body to calm down and stop being so over reactive. She’s become very sensitive to just being around some foods these last few months. She can’t even sit at the kitchen table with out breaking out in hives just from touching the table. I also pray her fist scope after getting the tube is clear so we can start to successfully add foods to her diet. 

Friday, February 14 

Share the tubie love! Share pictures of you or your child living life to the fullest, or pictures showing off your tubie love gear. Today is about living and loving life. 

I recently did a blog on this as Gage passed his one year mark with the tube.

I will share some pictures of Tinleigh with her tube! She recovered then got sick and then sicker so she hasn’t done a whole lot yet as far as living her little life to the fullest. The days she feels good though nothing holds her back!

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I was very excited when I learned the theme this year for feeding tube awareness week “Nothing can hold us back”. I really feel it goes right along with my blog LIVING the Allergy Life. We are living and though I’ve been slacking a lot these last months I do plan to continue to show that allergies, asthma, EoE and feeding tubes don’t hold us back. We will forever keep on LIVING!

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February 14, 2014 - Posted by | LIVING

1 Comment »

  1. As always, your family amazes me, as you do. I wish I was there to help, but know that you all are always on my mind, and I pray for you all too! Hugs and love to you all. You are THRIVING & Surviving!!! 🙂 XOXO Jessica

    Like

    Comment by Jessica | February 14, 2014 | Reply


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