Catching up

17 Apr

We are home! We got home Saturday afternoon, it has been a bit hurly burly since then so haven’t had a chance to update. So far, so good. We did have a small vomit on Saturday evening which we are choosing to ignore. Apart from that, the new feed regime seems to be working pretty well. We have discovered that Tilda prefers to be lying down during the slow evening feed so we have set her up in her room and it is pretty nice hanging out with her there.


She is back at school and enjoying it immensely by all reports. We have a swishy new stroller thanks to the lovely folk from Palliative Care who rescued it from the store room and had it modified especially for Tilda. She can travel in it in the school bus and it will make getting around much more comfortable
for her.

More to report soon including the upcoming Batten Association research meeting in Sydney that I will be attending on the 4th May! I am very much looking forward to it.

A huge thank you once again to our friends and family who support us more than they know. Our recent fundraising efforts raised over $7000 that will go towards helping Batten families like ours and towards vital research.

Much love


10 Responses to “Catching up”

  1. cally berryman April 17, 2012 at 8:34 pm #

    Good news to hear Tilda is home and looks so gorgeous in her new stroller. Love Cally Xx

  2. Louise April 17, 2012 at 9:24 pm #

    Great to hear Tilda is home again! What a terrific photo of “the girls” hanging out in her room!! Louise xx

  3. Danielle x April 18, 2012 at 8:09 am #

    Tilds looks so comfortable in her new stroller! Easier for you & Simon to fold down? 🙂
    Love you darling x

  4. Juliet April 18, 2012 at 9:42 am #

    Wonderful that you are home and that Tilda can get to school and back in comfort! Fingers crossed for continuing good feeds. All my love.

  5. Daryl April 18, 2012 at 10:45 am #

    What a roller coaster the feeding issue has been but.wonderful to see Tilda looking so happy and well . Hope you have some breathing space now life is back to more of a normal routine for you all ……Love Daryl

  6. Benita crocker April 20, 2012 at 12:24 pm #

    Great shot of the shoes as well!!! xo

  7. Didi April 30, 2012 at 3:54 am #

    My dear friend I hate that you have to go through all this up and down but glad Tilda is at home now and happy.Children are so resilent aren’t they.It is hard for us more so.xoxo

  8. Didi April 30, 2012 at 3:56 am #

    All my love to you,Simon and Tilda

  9. Anne Bunting May 3, 2012 at 8:31 pm #

    Am hoping that the reason you haven’t posted any news for a while is that life is slowly getting back to a relatively normal routine after all the ups and downs of the previous months. I’m sure you’ll not only gain a lot from the Batten Association conference but will be both an inspiration and source of information for others there.
    Much love to you all Anne

  10. Rebecca May 30, 2012 at 10:27 pm #

    Beautiful photo of you guys. Much love Rebecca x

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