Well Ashling was 9 months a few days ago, and her latest party trick is that she's saying 'Dad Dad' though she has no idea what she is saying. Dad is delighted all the same. She is also starting to clap her hands. The Nanas are responsible for this trick!
Despite being a bit weak and low in energy in the last week, she's generally in great form since she recovered from that nasty spell a few weeks ago (about a month of sickness). Friends of ours were round recently and knocked some great giggles out of her. It is worth looking at. http://www.youtube.com/watch?v=2g-AgR2TKrY. Just a quick note for those of you with a slow connection, you need to let it load first for about 30 seconds: you'll see a pink line moving along underneath it, ahead of the video. If you’re not sure how to do this, just pause it and let it load, then work away. Otherwise, it will keep starting and stopping for you.
Anyway, just wanted to get you up to speed with Ashling's progress: We tried taking the tube out for 4 days and letting her get as hungry as possible. It was all very stressful to be honest cause there was so much pressure on. Unfortunately, as much as she showed an improvement in oral feeding than when the tube is in, she just couldn't take in enough milk to sustain the energy she needed to continue. It was a bit of a catch 22 - starve her so that she would feed, but with little food and low energy, she got tired after 5 minutes and wouldn't feed much after that. The good thing about it all is that we are now very confident that she will feed long term, when she has enough strength and stamina to do so because she showed a lot of interest and capability.
The other thing that we've discovered is that it seems to be the tube that’s been causing all the excess mucus and spillage. During the time that the tube was out, Ash didn't get sick much at all. So the next step from here is for Ashling to get a mickey button (a gastrostomy). We went to see the surgeon and there's a 6 month wait on the public list. Luckily, Ash is covered privately so we're actually getting it done next Monday (4th of August). Ash will be in hospital for a few days after it.
Hopefully, she will do much better with the mickey button as she will be able to eat as much as she likes orally, without the gagging feeling of the tube hanging down the back of her throat. We're really hoping that she won't need it for more than a year or two. If you want more information on her gastrostomy, have a look at the following link. Ash will be getting the balloon device mickey button. http://www.ich.ucl.ac.uk/factsheets/families/F000380/
Well that's about it for now. Over and out xxx
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