5 May 2009

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. She is sleeping more during the day and usually has a couple of good naps in her armchair.

In January Isla had her tummy tube replaced with a MicKey button and detachable feeding tube. This is very discreet and it is nice that Isla doesn’t have a tube permanently dangling out of her clothes. It is very easy to use and we will be able to replace it ourselves rather than Isla having to go back to hospital to have this done. Isla has half of her fluid meals as a continuous pump feed overnight now because she was having trouble getting sufficient volume through her gravity feeds during the day.

The members of the Kalamunda Lodge of Freemasons made an extraordinarily kind and generous donation to Isla recently. Initially we had hoped to use it to purchase a swing for Isla but she now needs more physical support than the swing provides. Instead it will be a huge help towards the cost of a supportive car seat for Isla that enables her to recline slightly and keeps her safe and comfortable. Thanks so much to the Kalamunda Lodge for their wonderful gift. Sabine is quite besotted with her big sister. Her first word was ‘Isla’ and now when she is picked up from daycare she chants ‘Isla Isla Isla’ during the drive home. She loves to snuggle Isla and give her hugs, and her favourite place is Isla’s bed. Isla is gently accepting of even the roughest love from her little sister. It is wonderful seeing our two girls spending time together.

Tanya, Luke, Sabine and especially Isla.




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