1) To answer today’s FTA weeks’ question: Why awareness is important to my family? What would be difference for me/my child if tube feeding was better understood? Feeding tube awareness is important to my family because we want to feel accepted and more comfortable with friends and family. Neither my child nor her parents are failures because of a feeding tube. In Whitney’s case, she didn’t learn how to eat, and when she was able to, it was painful because of unmanaged reflux. It's important to realize that the feeding tube is a last resort life saver, and without it, Whitney would not thrive. Even though she has a strict schedule, we can still have a fun life! We can go to the park, bike ride, hike, and even go out to eat. Although, I’m very concerned about germs and Whitney getting sick, so I simply take extra precautions. Awareness of the three different therapists working with us to improve her skills, including, eating, sensory, and fine motor. We can't just "feed her ice cream" and all of a sudden she will love eating. In fact, Whitney can barely tolerate being next to food! She might try a bite at first, but the become very anxious around food. Whitney doesn't have the skills to eat most foods or drink thin liquids. That is what I and the therapist are helping her with. I’m grateful for feeding tube awareness week so that I can have the opportunity to share with my friends and family about Whitney and her feeding tube. Thank you all for participating in feeding tube awareness week with us! There are so many reasons a person could need a feeding tube and we need to support them!
You can tell I was trying to at least pretend to smile through my tears.
This is the first time Whitney "went" some where! We were mini golfing at Castles N Coasters! We didn't take her out during the winter because of too many germs and she threw up a lot and because of her feeding tube. But when we did it was out doors and she was covered up!
We took her to the park and still do!
We took her on a beach vacation and even to a restaurant! I do like taking Whitney out to eat. She's needs that type of exposure and a good variety of foods to smell and look at and to see how much fun people have while eating! I took her out with a friend the other day to a restaurant. I had to tube feed while I was there and got a few stares but no comments! My friend said it looked like I was "druggin" her! Whitney is not entertained or preoccupied by food at all! I brought a couple of toys for her but after 45 mins she was done and wanted out of there! But it was still fun!
We took her on a vacation to Utah and Idaho in 2011! Although she threw up in the car a few times and on her cousins toys, we still had lots of fun!
I never really got any comments on Whitney's NG feeding tube from strangers. We to the store sometimes, got her bangs cut sometimes, and we even went to the Musical Intrument Museum and the Splash pad with the NG tube! I plan on doing the same fun things this year with Whitney even though she has a g-tube.
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