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Thursday, February 14, 2013

2013 FTA Week- Day 5/Valentine's Day

Today's Topic: Happy Valentine's Day! I love my Tubie!
Valentine's Day 2010, 3 weeks after NG tube placement

What is the best thing that has happened with tube feeding? What benefits have you seen? What progress would you like to celebrate?

I think this topic is best explained in photos. Here are some pre-feeding tube photos:
Exhibit A: Miserable 4 week old Raya
Exhibit B: 4 week old Raya spitting up for the billionth time:
Exhibit C: 2 month old skinny miserable Raya:

And here are the post-feeding tube photos:
First NG tube picture. If she could talk, she would have said, "Whew, I don't have to drink that NASTY formula anymore!"
One of my all-time favorite pictures of her.
"Hey look at me! I made it onto the growth chart!" (because of her feeding tube)
7 months old, still puking but still getting more plump & juicy every day (because of her feeding tube)
10 months old, vomiting multiple times daily, vomiting blood, not really gaining weight, but still smiling and still getting fed & medicated (because of her feeding tube)
First birthday, learning to walk with feeding pump in tow, still puking, still not gaining much weight, fighting off c. diff, but still alive & well (because of her feeding tube)
18 months old, finally not puking so much, still not eating at all, still fed by GJ tube, not gaining much weight, but not starving to death either (because of her feeding tube)
21 months old, bolus fed to G tube, weaned off of one long-time med, starting to be mildly interested in food, not scared of water in her mouth anymore, finally gaining weight again (because of her feeding tube)
2 years old, doing great (because of her feeding tube)
(are we noticing a theme here??)
2.5 years old, much more interested in food, likes dry crunchy things and sour cream, still 75% tube fed, still gaining weight, still healthy (because of her feeding tube)
3 years old, catching up developmentally, working really hard in therapy, going to preschool, allergic to a lot of food, not allowed to eat anything but Smarties & DumDums, miserable from reflux flare that won't quit, but still getting the nutrition she needs

The question today is what benefits we've seen and what positives have come from Raya having a feeding tube. To keep it plain and simple, she's alive!! She's hit bumps in the road recently, but she's doing great, and the reason she's doing great is because for the last 3 years and 3 weeks, her body and brain have gotten all of the nutrition they need because of her feeding tube. Everything she is at age 3 is because of her feeding tube. Sometimes I hate that little tube, and sometimes I hate that she needs it, but there are also no words to describe how much I love the medical device that keeps my daughter alive and healthy. Without it, she would not be here, so that is what we are celebrating this week.

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