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Isla is calm and settled most of the time lately. It is so lovely to see her relaxed. She is still waking several times during the night and has sleep medicine to help her, but her nocturnal wakings are usually no more than an hour each time now, which is much more manageable than before. […] Isla has started a special new anti-seizure medication from Japan. While her seizures haven’t lessened, Isla does seem more at ease generally. She is also sleeping better – last night she slept through the whole night, for the first time in a year! Isla’s PEG (gastrostomy) is still going really well. She uses it […] A lot has happened over the last few months. Isla’s difficulties with swallowing have worsened and after many discussions with her doctors we decided it was time to get a feeding tube (PEG) inserted. Isla went to hospital a couple of weeks ago and had the PEG put in. The operation went well and […] Isla had an eyesight assessment last week. Her test result wasn’t the best news, although it was pretty much what Luke and I expected. She has some peripheral vision, mainly light and shade and high contrast objects and images, but probably not any detail. It doesn’t look like she has central vision now. We […] Carrie Young takes amazing natural light photographs of children and families. Carrie heard about Isla and came and took some gorgeous photos of Isla and Sabine recently. You can see some of them on Carrie’s blog at: http://carrieyoung.typepad.com/love_laugh_live/2008/06/isla.html More of Carrie’s work can be seen on her website www.carrieyoung.com. Carrie’s blog is a […] For the last five months Isla has been on an experimental drug regime of Cystagon and Mucomyst in an attempt to slow down the progress of her symptoms. The medications have to be taken every six hours and had unpleasant side effects including belly aches, nausea and so on. Tanya and I decided we […] Things are slowly getting back to normal now that the Isla Love Concert is over. We had a wonderful time and had some great feedback from everyone who went. It was Isla’s second birthday last Saturday. She had a very busy day with a family celebration in the morning and a party with friends […] from Luke Donegan Tanya and I are still constantly being overwhelmed by people’s generosity. Tanya had morning tea with her ex-colleagues from Identity WA, an organisation which Tanya used to work for which provides respite services for families with children with disabilities. Tanya’s lovely colleagues donated a cheque of over $1000 which at Tanya’s request […] |
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