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Feeding Tube Awareness Week 2018: Day 5

Educate and Celebrate: Fired Up About NutritionFriday, February 9th
Make a plan to educate 5 friends, family members, or media sources about tube feeding. What obstacles have you or your child overcome? Celebrate the successes. Show your tubie love!

When Raya's older siblings were in elementary school, they did presentations for their classes about feeding tubes for FTAW. The experience was awesome and the kids were much more interested in listening than what we expected. This year, I felt like Raya was at an age and maturity level where she could probably handle giving a presentation for her class, so I asked her if she wanted to. She thought it sounded like a great idea, so we set it up.  Watching her speak in front of her class today was magic. She stood up in front of her class and told her story, and taught her friends about the different types of feeding tubes and the supplies we use to feed her. When she finished, they asked her a dozen or so questions, and she answered the al…
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Feeding Tube Awareness Week 2018: Day 4

Support: Fired Up About Nutrition​Thursday, February 8th
It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters. 

Today's FTAW topic is Support. I consider myself incredibly blessed to have a supportive family throughout this journey. Not just my parents and siblings, but also my incredible extended family. There have also been circumstances that could only be fully understood by the friends who are fighting similar battles, and many of those friends have become like another family to me.
The things parents find themselves doing in the process of raising medically complex children do not always make sense from the outside looking in. I know there have been time…

Feeding Tube Awareness Week 2018: Day 3

Benefits: Fired Up About Nutrition​Wednesday, February 7th
What has tube feeding meant for you or your child? What benefits have you seen from tube feeding? How has tube feeding improved your child’s life? Dispel myths that people have about tube feeding.  

I've been racking my brain since last night about what I could say today. I've typed and deleted, typed and deleted, and typed and deleted. I could go on for days about all of the questions in today's topic but I won't. I just want to touch on a few things that are on my mind.
What has tube feeding meant for my child?  She. Is. Alive. SHE'S ALIVE. And not JUST alive, but she is thriving! She is winning at life! She is one of the happiest people I have ever met. To know her is to love her, and she is the way she is today because of the nutrition the tube has allowed her to get when she has not been able to take in enough by mouth.
What benefits have you seen from tube feeding? Again, SHE'S ALIVE. I look back at …

Feeding Tube Awareness Week 2018: Day 2

Nutrition: Fired Up About Nutrition ​Tuesday, February 6th
There are long-term consequences to malnutrition and being undernourished. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need to live.

Each year, we have a different theme for Feeding Tube Awareness Week. Back in November, Traci (the founder of Feeding Tube Awareness Foundation) and I sat in a restaurant in between sessions of a conference we were attending, and brainstormed about this year's FTAW. Over the past couple of years, we have been involved in some projects with medical professionals from various locations and as we tossed around ideas for a FTAW theme, we agreed that it needed to have something to do with nutrition in some way. We were hearing so much about nutrition and malnutrition in our interactions with medical professi…

Feeding Tube Awareness Week 2018: Day 1

Awareness: Fired Up About NutritionMonday, February 5thShare information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding – most of which you can’t see. Most people do not understand why someone, particularly children, can’t eat enough to grow, thrive and live. Help educate people about the medical conditions that can lead to tube feeding.

Did you know that there are literally hundreds of medical conditions that can lead to tube feeding? The Feeding Tube Awareness Foundation has identified at least 340. It can be difficult to understand why someone who looks healthy on the outside could need a feeding tube. Many of these medical conditions are "invisible," meaning there may not be any obvious outward signs of medical problems. One thing that I want people to understand about tube feeding is that every family's story is unique and individual. It's important to remember that if you've met one person w…

Allergy-friendly Tater Tot Casserole (GF/DF)

It's no secret that we have some dietary restrictions in our house. Out of our 5 kids, 3 have food allergies. One is allergic to dairy and bananas, another to peanuts, tree nuts, bananas, mango, kiwi, avocado, and possibly shellfish, and then Raya is allergic to wheat, rice, dairy, peanuts, tree nuts, oats, and shellfish, and there are others that we avoid. In addition, when our youngest was a couple months old, I had to go off of dairy because when I had any, it did terrible things to her. She was on breast milk for about 21 months so I was off dairy almost that long, and when I stopped pumping for her, I just didn't go back to drinking milk because I realized my body felt better when I wasn't drinking it. (I did go back to sour cream and cheese because we eat a lot of Mexican food and Mexican food is LAME without dairy.) Over the last few years, the menu in our house has changed drastically from what it used to look like. There are a lot of meals we used to eat often an…

The space between white dresses

I still remember walking into the little boutique shop and heading straight for the tiny white dresses. I didn't have anything specific in mind but I was determined to find just the right dress for my tiny girl. I looked, and looked, and looked. There were dozens of different dresses, each one a little different and each one beautiful, but none of them felt like "the one". Then I saw it. It was a simple but elegant long, white satin gown with a few delicate ribbon flowers across the front. (and a reasonable price tag) It was PERFECT, except one thing. They only had a size 3-6 months. There was no way my 7 pound baby could wear that. I looked through the 0-3 month dresses again, hoping I had just missed it before, but no luck.

Then I turned around and saw a smaller version of the exact dress hanging on a high rack that I hadn't noticed before. I took it to the register where the nice lady tried to talk me out of buying a newborn size dress and reminded me several time…