Trains and Sparkly Shoes

30 Oct

Tilda has always loved trains. For whatever reason, the sight of them can send her into a complete frenzy! When I first moved back from Darwin, Tilda went two days a week to a child care in the city. It was chosen specifically for its location right across the road looking down on the trains going between Flinders Street Station and Spencer Street (sorry, Southern Cross) Station. Most days, when I went to pick her up, I was told that Matilda spent a good portion of the day looking down on the trains and squealing with delight. Each time a train came, it was like she was seeing one for the very first time.









Today, we rode the train to see Grandma and Grandpa.  The squeals of delight are absolutely still there.


Having Grandma and Grandpa home again is wonderful. They brought Tilda back the most amazing pair of shoes you ever did see. I want them in my size.

Sparkly AND they light up 🙂 Well done Grandma and Grandpa!

General Updates

The very slow Topomax wean continues as we dropped from 25mg at night down to 15mg.  It seems counter intuitive as we have been  noticing that Tilda’s seizure activity unfortunately increasing. But I don’t believe the increase is related to the wean.  We will touch base with our neurologist in the next week or so to see if it is worthwhile undertaking a 24hour EEG to discover exactly when she is seizing and when it is benign. A lot of her ataxia and general shakiness can be mistaken for seizures and I think it would be beneficial to get a really good picture of what is going on.

The eating continues to be a battle and the idea of a PEG becomes less frightening and more appealing. She has started to refuse even her former firm favourites – blue cheese, potato chips, tomato sauce. The only two meals that she eats with absolute certainty  are her weetbix in the morning and vegemite toast. She is so Australian. 🙂

Countdown to Wish Day has begun – invites to be sent out later this week!

Thank you so much to all that have already donated to the wonderful Benita – she has already raised over $1700 for The Batten Disease Support & Research Association – amazing. If you haven’t donated and would like to please visit –

Thank you also for all the wonderful comments – I am attempting to reply to everyone but have been a bit slack. I love reading them though so please keep commenting!



12 Responses to “Trains and Sparkly Shoes”

  1. M October 30, 2011 at 5:38 pm #

    Hi, if you get onto those shoes….I’m a size seven. x

  2. Carole and Garry Laird October 30, 2011 at 8:46 pm #

    We just love that photo of Tilda on the train.

  3. Ruth October 31, 2011 at 7:43 am #

    Those shoes are sooo cute, they put your pluggers to shame Laura 😉

  4. jackie October 31, 2011 at 2:56 pm #

    LOVE the train squeals, so cute! yes miss tilda I think I want a pair of the same shoes too! xx

  5. Waidehi November 2, 2011 at 5:06 am #

    Agreed – the train squeal is just brilliant and joyous!! And those shoes are so very fashion forward. xo

  6. Danielle x November 2, 2011 at 7:49 am #

    Those shoes are AMAZING! 🙂

  7. Jan Marshall November 2, 2011 at 9:40 pm #

    Great to have Grandma and Grandpa home – I’m sure they were much missed!

  8. Olivia November 5, 2011 at 9:29 pm #

    Dear Laura

    I have been so moved by your updates on Matilda. She is a beautiful little girl and looks so like you. I knew you when you were little in Hong Kong. I remember you so clearly as the dearest child. Like a younger sister to me. I’d stay with you, Ben, Kylie, Bob and Janet often when Mum and Chris went away….you were all so wonderful to me.

    I’ve often thought of you over the years…you really were such a sparky lovely presence in my life in HK. When Mum told me you had a little girl I was so happy to hear it. Then I learnt of her condition and my heart broke for you. You are an extraordinary mother, Laura, and all the qualities I remember shine through in your writing. They also shine through in Tilda. She looks so happy…and that’s entirely due to you. She has a wonderful loving family around her too.

    The first update I read was the one before this one, and I have thought about you so much since. Thoughts are very powerful things and its clear that you are surrounded and supported by them from those close to you. I am so proud of you that you have set up Teamtilda. I am also grateful because it enables me and others to connect and articulate thoughts rather than just ‘think’ them.

    She is a beautiful little girl, Laura, and I can’t wait to meet her when we come to Melbourne. Our little boy, Isaac will be very happy to have a Melbourne friend too!

    Love Olivia XXX

    • teamtilda November 8, 2011 at 3:06 pm #

      Hello lovely Livvie! How wonderful to hear from you! I remember you very well from Hong Kong days. I have a particularly strong memory of the two of us mounting a protest about one of your neighbours who was keeping a bird in a cage – we were determined to set him free! I don’t think we actually did though! 🙂
      Thank you very much for your kind words. I think we are just very fortunate that Matilda is such a cheery soul. Long may it continue. The blog is so great for me to be able to pour out thoughts, I am very happy that others find it interesting too.
      Are you coming to Melbourne any time soon? And would that be permanent? It would be wonderful to see you and meet your little one – how old is Isaac?
      Much love to you and hopefully see you soon!

  9. Aphrodite Doukas November 7, 2011 at 7:59 am #

    Hi My dear friend I’m soo glad Tilda’s doing so well. I wish i could there for you and Matilda in person rather than just in spirit. It would be so lovely if i could just say I’m coming and to see you and your beautiful daughter.I miss you so

    • teamtilda November 8, 2011 at 2:45 pm #

      Hello lovely, wouldn’t that be wonderful! I would love to see your smiling face! But I know that you are here for us in spirit and that is enough for now. much love. xo

  10. Ken and Wendy Brown November 9, 2011 at 11:06 am #

    Hi Laura,
    Tilda seemed to be delighted by the train and her magic shoes from Grandma and Grandpa. I think it is wonderful how she can be so delighted by the simple things in life. We could all learn from her in that regard.

    She has such a capacity to express her joy and is so fortunate to have such loving parents and family around her. I hope she enjoys her cousin’s birthday party.

    Love Wendy

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