The time has come!!!! March 22nd, 2009

Hi All,
Just a quick update on Ash’s feeding! As you know we’ve wanted to try weaning Ashling off tube feeds for a long time, and ultimately starve her in an effort to get her to eat more. Although we’ve tried a couple of times for a few days and it didn’t work, we’ve been waiting for the right time to try it properly and for a longer period of time. Now, the time has come…..quite unexpectedly!
We had intended on doing this sometime over the next month but Ashling was sick last week and she had more mucus than ever and couldn’t keep much of anything down. To help her, we stopped giving her milk as dairy causes even more mucus. The offshot of this was that she started showing an interest in food and drink as soon as she started feeling better as she was only getting a very small amount of tube feeds. This started 5 days ago and though she has lost weight already as we have kept her on smaller amounts of food, she is showing increased interest in eating.
Ger and I had been thinking about taking Ashling to a Feeding Clinic in Austria, where kids are basically starved under medical supervision, with a lot of input from various professionals. They usually spend the first week weaning the child and then go cold turkey. The programme takes about 3 weeks and while kids do lose a lot of weight, they have a 99% success rate of the child not needing the tube anymore after leaving the Clinic. As it happens, we have nearly finished a week of weaning her (unconsciously) and so we are planning on going cold-turkey next. We have made contact with this feeding Clinic and they are going to provide online support and guidelines to follow over the next fortnight. The link is http://www.notube.at/home/en/index.php if you would like to look at it. We know 2 other families here in Auckland we have taken their kids to thie Clinic and have successfully weaned their kids off their tube feeds. They have been a wealth of information and a fantastic support for us. We also have our Speech and Language Therapist, Nurse and Dietician on board (though their input will be miminal) so we’re going full steam ahead, starting tomorrow. Nerve-wrecking but exciting stuff!

We really feel the time is right. Ash has been off oxygen for over 3 months now and seems to be getting much stronger. However, over the past few months her eating has become more unpredictable and sometimes she neither eats nor drinks at all during the day and ends up totally dependent on what we give her by her tube. Although her medical history speaks for itself, nowadays most of her oral aversion has gone and we believe that a lot of her problems and more mental and behavioral than physical. The main physical challenges for her are that she is not able to eat very efficiently, doesn’t know how to chew and has never managed to swallow anything other than puree without gagging and then throwing it back up. However, the only way that this will improve is through practice so we have got to the stage now that she needs to desperately want the food in order to learn how to eat it properly. She is able to drink from a sipper cup and she can eat small amounts of pureed food so there is no reason why she can’t do this, though we know she’s going to fight it all the way!!!!
Please pray for us over the next month and send as much positive energy our way as you can.
Thank you,
Caroline and Ger xxxxx