1 week later

Today marks 1 week since Donna and I flew to Melbourne to be with Alyssa. It’s been a surreal experience, and the time has really flown by. We’re really starting to miss home, and our own space, but are still not totally confident in taking Alyssa home.

Today is her first day since *that* Sunday that she has been entirely off the glucose drip. Before now, we knew that she had a safety net if there was a problem with her feeding, etc, but right now we’re relying on measured feeds and a top up of “polyjoule” – basically a glucose powder that is mixed up to provide her glucose orally.

Today we talked about whether we should switch to bottle feeding, so we can be sure that she is getting enough food in each feed. Donna is worried that otherwise she won’t be able to tell if Alyssa has the minimum 60mls she needs to last the 3 hours, but then she’s also worried that Alyssa will become dependent on direct feeds, which will cause a lot of problems down the track.

Apart from worrying about the future a little (a nice luxury we have now), we have had a pretty good day. Alyssa is even more keen to feed and is getting to be a bit of a mummy’s girl, crying if she doesn’t get enough of a cuddle before we put her back to bed! Alyssa and LiamLiam has had lots of cuddles with her and is so interested in all her tubes and leads, telling everyone about her “tummy tube”. We’re really glad that the boys came over though, and tomorrow, weather and timetable dependent, we’ll probably take them to the zoo for a treat.

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2 responses to “1 week later

  1. kaaronmitchell

    Not sure if you know Warren and Donna, but there is a site: Association for Glycogen Storage Disease

    http://www.agsdus.org/

  2. Dear Donna, Warren, Tristan and Liam
    Just read your blog on Alyssa’s Journey so far, what a lovely idea and for you to have as a keepsake. Also, just received some current photos of Alyssa from Faye, she is such a cutie. We are so happy that she is improving and feeding a little better now and we hope you get back home soon with your precious little girl. Look forward to seeing you all xx

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