Tube weaning

Sorry for the long time with no update - The day after TimeWarp - no rest for the wicked -Meg, Jason and I began Meg's trial tube wean & have been at the RCH Melbourne - this means we are seeing if she is capable of eating & drinking orally enough to sustain herself without having to tube feed her. We are on day 10 and it has been a long hard emotional road. But Meg is taking a very keen interest in food for the first time in her life. The weaning process basicly means we stop feeding her via her PEG (Gastonomy tube) and offer her food and drink all the time. Quite an exhausting process, its very hard to see your little one unhappy and hungry - I keep thinking of the hungry hungry catapillar - on day one she ate one spoon of puree - on day 2 she ate one spoon of puree and 1/2 a weetbix etc etc etc - and it really has been very much like that right through up to day 10 when she ate Houmous / Caviar dip/ avocado/ Lamb & Veg casserole w sour cream / mango & apple cereal / Tiramisu / carrot sticks (steamed) / strawberries / apricot tinned & lots more to boot.

We are learing what she likes and doesnt like and her communication (Yes & No's) are getting better and better - its all up to her and we have to place her under no pressure to eat. Not an easy task!

Anyway thats the latest on where we are at with Meg - and now the rest is up to her - we will moniter her weight and hope her oral intake increases with each day untill she starts to put on weight - which could be 4 - 5 months away. This process will totally change her Biorhythm's and is like breaking an addiction to her Peg feeds.

I would like to thank the team at RCH - for trusting in me and for giving us the chance to do this here under their guidence as it was not believed by many experts that Meg would be able to eat orally but she seems to be proving them all wrong to date, lets hope she continues to improve, we still have a long way to go.

For more information on the process we are going through please look up http://www.notube.at/ - this is the clinic in Graz Austria we have spoken about in past posts - we are currently using their online coaching service in conjunction with the RCH team. ( Your donations have helped pay for the $700 EU we had to pay to use the service.)

If your looking at our blog because your going through a similar thing with your child then please log on to http://www.tubefedkids.ning.com/ for a fantastic supportive community of parents with tube fed children, some going through this some have been through this and some are about to begin, its a great source of support, Ideas and information.

Thanks to everyone for all the support.

Kate n Meg

xx

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