It isn't long until we take Faith's NG tube out and I really truly hope it is forever. After reading and reading all about tube weaning and the different styles of approaching it, we decided upon with consultation with our speech pathologist to use the similar methods to the University of Graz. As of yesterday we are in the hunger induction phase of Faith's tube weaning and we have noticed she is is discovering hunger but still not taking taking anything orally, still feed through her tube. She is interested in food, even had a few dips into my bowl of cereal. She stares very inquisitively at food and seems to want to know more. She also has been playing a little with her food at her own choice.
The preparation and research is quite intense and draining. I talk to the speech pathologist every day and we work through an concerns or issues. We go through EVERYTHING and have back up plans. It is all very well thought out and planned. We thought we would make some Boardmaker activity sheets on first tastes, eating and the one I doing tomorrow is on tastes, so pictures of her food in puree form and its normal form. We are also increasing our Makaton sign use with signs to do with food. We have been having 'eat dates' nearly every day so Faith can see other little people and big people eat. It has been great getting out and seeing friends each day but also quite tiring. On one of our outings this week gone, Faith threw her NG tube up right before her tube feed was due so my friend, whose daughter had a NG tube a few years ago kindly gave me a hand so I didn't have to call hubby, all I need is someone who knows what to do, holding Faith still and I can do the rest.
I have our Hunger Induction chart printed out by day and write many many notes on it. So we can see how everything is going. I have my daily running sheets for when we are in Brisbane, I have equipment, food, schedules and activity lists. It is all really ready to go and I can see Faith will have fun with what we have planned but I just want the time to arrive so we can get started with no NG tube.
Do you know how hard it is to find books for kids that just talk about eating and food? It is quite hard. I have Teddy's Bears Picnic, Possum Magic, At the Supermarket, My Food and a little board book about foods, but they are so hard to come by, if you are reading this and know of any, please tell me as we are trying to have Faith surrounded by food activities while we are Brisbane and when we come home. We have a Play School DVD called Munch and Crunch and a Dorothy the Dinosaur Tea Party DVD. We are trying so hard to show Faith all about food and drinking. It that is fun and we can have lots of fun with food. This morning Faith and I had a tea party with the grey elephant and two of her dolls. She was quite fascinated. Now we just have to work our way through this hunger induction phase and learn more about Faith's ques on food and hunger and try and show her about hunger. It is an exciting new phase for her and us and I believe she is truly ready for this. Her whole identity is changing by introducing food, as she has been NG tube fed for over a year.
Here is a link to a interesting case study on tube weaning, I have listed interesting feeding blogs on my blog list and resource list if you are interested in learning more.
http://www.pediastaff.com/blog/case-study-pediatric-feeding-tube-weaning-3816#
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