6 October 2008

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 now Isla takes most of her food, drink and medicines through the PEG. We offer her food orally every meal time and when she has a good day she can eat quite well. The good thing about the PEG is that Isla doesn’t have to taste the medicines that she has to have, and it makes it much easier to keep her food and drink intake up at healthy levels.

Isla’s seizure activity has also slowly been progressing. She has just started a new anti-convulsant called Keppra which hopefully will get things under control. The seizures do not seem to bother her in themselves, however they can keep her up at night and prevent her getting the rest she needs.

People often ask us how aware Isla is. It is difficult to tell because Isla does not have the ability to speak or use her hands or maintain eye contact. However, we feel that she is still aware of the people she is close to. She loves being held and snuggling with Tanya and myself and her grandparents. She kicks us in the back when she wakes at night and wants to have some milk. And when her friends come to visit her mood lifts noticeably. She loves her bath in the evening and she loves lying on her back on the lawn with the sun on her face. She and Sabine hold hands in the double pram when we are out for a walk.

Tanya and I are completely focussed on looking after our girls and doing everything we can to increase Isla’s quality of life. We believe that she does still have quality of life, and there are many times during each day when she seems content and at peace. And Isla brings such absolute joy into out lives as well.

Update – Isla has been on the Keppra for two days now and in that time we haven’t seen any major seizure activity.

Tanya

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