Charlotte will tell you that the most memorable part of her visit to the CHOW feeding clinic was that "Dr. Julie changed 'Harlotte's tubey." That's true. Our RN, Julie, did change Charlotte's MICKely button since it hadn't been changed since April.
And for Charlotte, that probably was the highlight. She cried a little, but was mostly very brave.
But what does a 2-year-old really know?
The real excitement of our visit was this: We were given the green light to go for two months with no g-tube usage. In other words, what Charlotte drinks, she drinks. If she doesn't make a full 200 mls. at a meal, we don't "top her off" with the tummy tube.
Given that prior to our visit Charlotte had gone for as many as 9 days without needing the tube, I went to Milwaukee ready to lobby for a trial. When the team offered it to me before I could suggest it, I was over the moon.
We're also supposed to start offering mashed foods in addition to pureed to begin to transition her to eating regular solid food.
So, how is she doing? Since Friday she has drunk all of her "required" milk (600 mls.) and on at least one day she has drunk even more. Yesterday she got to 640 mls. She's eating just beautifully, though I think she's bored with her puree repertoire. Mashed foods are more of a challenge, though, because she loses focus quickly.
Sometimes it is hard to remember how far we've come. Here's what I wrote on January 8, 2006:
Charlotte continues, seemingly, to lose ground on the eating front. She took only 1-2 ounces from each of 3 6-ounce bottles today. Just a few weeks ago she was finishing at least one bottle a day and taking 4 to 5 ounces from the others. Since yesterday she's been refusing or gagging on her solid food, too.I feared that she would be come 100% tube-dependent.
Two years later, I'm sincerely hopeful that we'll be celebrating her birthday with a bandaid on the soon-to-be former stoma of her g-tube. Of course, I know she can go backwards as quickly as she has jumped ahead, but my fingers (and toes and ears) are crossed that she'll be bikini-ready by summertime!
p.s. The other terrific highlight about our trip was that we had lunch with a friend of mine from my Discover Card days who is now working at Harley Davidson. Col, it was so great to see you!
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6 comments:
It was FANTASTIC to see you and to finally meet little Miss Charlotte in person! What a cutie pie!She's just as adorable in person as the photos that you share. Would love to have her meet my Kate-ster sometime. I'm also keeping all my appendages crossed that Charlotte will be bikini-clad by summer! Looking forward to our lunch date in March!
The past two posts were truly inspirational for me. One day after our first urp-and-vomit-free-day in the longest time I can recall, we had one of the most vomit-ful days ever (three MAJOR gut emptying events). Given that this day is not yet over (we do the bottle version of tube feeding, namely sleep feeding, to top off our daughter), and given that we are currently thinking 'will this ever end? when will we go back to regular normal-people paper towel consumption and laundry loads more appropriate for our small family?' reading your post has helped a lot. We are increasingly aware of the fact that we still have a far way to go to achieve any kind of normal life (feeding only happens in front of DVDs, our toddler can only eat stage 2 purees, and language is still a thing in the future), reading about Charlotte's journey gives us a lot of hope that someday things might get better. Thank you, Charlotte, for helping us keep hoping!
Hi Ilene,
I was unable to reply to the PM at P2P because of the site problems . . . but that's great that Charlotte is doing so well!!! She looks awesome in her glasses! :-) As far as puree recipes, I just basically would think of what we would eat for meals and use the Magic Bullet to puree it. I made some adjustments, like using graham crackers instead of bread for PB and honey sandwiches when I pureed it. Soups and stews were good, mac and cheese, etc. I just used things that kids that age like to eat. Mashed potatoes did not work well at all-- they would get thicker upon standing. Good luck!!
HI. My name is Tiffany and I am new to this site. I have a 2 1/2 yr. old boy that eats only through his g-tube. Reading your part of your story is encouraging. I hope for my son to also be off his tube. Would you possibly have any advice for me?
Thank you.
Abby, I'm so glad that Charlotte's journey is inspirational to you. She's got a cold right now which if the first real test of the tube-weaning. So far so good. More on that later.
Tiffany, My best advice to you is to visit Parent-2-Parent & Reflux in Children, http://www.parent-2-parent.com/forum/, a wonderful online community of parents whose kids suffer from reflux and many of whom are g-tube fed for a variety of different reasons. Join us there! My "handle" there is
isg124; please list me as a referrer. Once you've posted enough, you can send me a private message and we can chat.
Indian Summer; Thanks, D! Great ideas. I'm amazed how well she's been doing.
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