Sunny days

20 Nov

First of all a huge THANK YOU and CONGRATULATIONS to my very lovely friend Benita who ran the City2Sea last weekend and raised an amazing $3117 for the  Australia Batten Disease Support and Research Association. Thank you so much to everyone who donated – it is absolutely fantastic. Benita assures me that the run wasn’t too painful and I am thrilled that she made it into the Top Ten Fundraisers list! Well done!

We are in countdown mode for Friday and can’t wait to see a lot of you there. I am keeping my eye on the weather forecast and so far it is promising. Fingers crossed for a lovely sunny day.

With sunny days comes a new school uniform! I had been looking for one in Matilda’s size for ages but haven’t been able to find one so I was thrilled when her teacher sent a couple of dresses home in Matilda’s backpack. They are, of course, a little big but she looks delectable.

The teacher also sent home a snazzy contraption called a Little Step by Step. It is used to record messages and can be activated by Matilda. Simon and I had rather too much fun recording things on it (some of which needed to be deleted!) and now we have an added of way of sharing information with the school and hearing what has been happening in Tilda’s day.

If you visit the Make A Wish website, you may recognise the little girl looking into the fireplace.  A few weeks ago, Matilda did a photo shoot for their Christmas appeal letter to donors. I wasn’t sure how she was going to perform but she did splendidly! She was little too enamored with the baubles on the Christmas tree so we had to put them in the fireplace to get her to look there! It was a lot of fun and we were happy to be able to help promote this lovely organisation that I used to be a part of.

Matilda is no stranger to the media. Recently, she starred (possible bias alert) in the October edition of  Gardening Australia with my very dear friend Millie. That shoot was also heaps of fun and she got to be in it with her favorite person in the world, her cousin Charlie.

More media fun was when we were living in Darwin.  The organisation I was working for at the time needed a small, cute child to promote their Christmas Carols event and so Matilda and I appeared in the NT News. The story is riddled with fabrications and half-truths (Matilda really had no idea what Christmas was all about and certainly wasn’t interested in learning the words to Rudolph!) but the picture is nice and it too was a lot of fun!

 

In health news, we have once again dropped a dose of Topomax in the morning and yet to see any significant fallout. At this rate, we may have this drug completely weaned before Christmas which will be great. I see no point in loading her up with drugs if they aren’t doing anything. The eating is, as always, a battleground. She likes one thing one day and we happily prepare it again only for her to turn up her nose at it. We will see what the Gasto Clinic have to say on the 20th December. Other appointments are for the 6th December with our pediatrician and on the 15th December with our pediatric neurologist. They all seem to come in a cluster! And, I have to say, are not a whole lot of fun. There isn’t much anyone can tell us so it is really about us updating them on where she is at and how she is doing. I should possibly just direct them all to this blog and be done with it.

 

See you Friday 🙂 Photos most definitely to come.

 

xo

 

 

 

 

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7 Responses to “Sunny days”

  1. Treens November 20, 2011 at 6:26 pm #

    We can’t wait for Friday – I’m on permanent forecast watch. Thinking excited sunny thoughts!!!

  2. Margaret Black November 21, 2011 at 11:35 am #

    I do hope you have a wonderful day on Friday. So sorry we can’t be with you but we will be thinking of you all and look forward to the video. Tilda is very photogenic. Looks so cute.

    Lots of love
    Margaret and Bill

  3. Kylie November 21, 2011 at 11:39 am #

    Just looking at Topomax side effects and loss of appetite does not look line one you want Tilds to be having! Great if you can get rid of that one. Roll on Friday…..

  4. Juliet November 21, 2011 at 12:57 pm #

    Matilda Media Star!!! I especially like the Gardening Australia photo, although the others are pretty cute, too.

    See you Friday

  5. Benita crocker November 22, 2011 at 7:28 am #

    Hey Lovely Laura, It was a pleasure to be able to help in a small way and everyone was so generous – I am still receiving donations now! Can’t wait to catch up Friday.

  6. Emma November 22, 2011 at 8:57 pm #

    Laura – I’m lost for words – the make a wish photo of Tilda by the fireplace is absolutely priceless. She is simply perfect. E x

  7. mardi November 22, 2011 at 10:19 pm #

    So looking forward to Friday Laura, can’t wait to see Tilda’s face on the rollercoaster!
    Weather schmether, rain hail or shine it will be a fabulous day! xo mardi

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