Archive | May, 2012

Trapped with anxiety

31 May

I would describe myself as a fairly calm, relaxed and laid back kind of person. Batten Disease has taken this away from me.

I may not always outwardly show it but I am pretty much constantly in a state of mild panic. This is heightened on days like today when Tilda shows signs of being unwell. We started the day with an increase in seizures. Then a slight fever and then some vomiting. The scariest one was when she vomited in her sleep, lying on her back. It was only that I was there to roll her over that potentially averted disaster. I don’t know why she had a fever. I don’t know why she has started vomiting and I don’t know what has increased her seizures. I don’t know at what point my mild panic should turn into full blown panic. I don’t bloody know anything, and neither does anyone else.

We wait. As usual. Wait to see what happens next. And we deal with whatever comes our way. It is all you can do. And just hope for some smiles along the way.


Glenallen Open Day

25 May

Yesterday, the wonderful Glenallen school opened its doors to the public and I got to show it off to my mum, sister and nephews. I have said this time and time again but this school has been such a godsend to us since Tilda started last July. We love them so much!

Tilda showed off her wonderful walking.

And Thomas rocked out in the music room!


It was a lovely afternoon and I continue to be delighted and grateful to have Glenallen in our lives.

Pondering and musing

17 May

I had been feeling a little mellow for a few days there. It could have had something to do with a bit of post holiday blues. For my birthday surprise, 4 lovely girlfriends whisked me away to Noosa for the weekend!! What a treat!!! It was so divine to lie in the sun, do nothing but eat and sleep and relax. Thank you so much to everyone who helped organise it, it was exactly what I needed.

But of course, with ups, there comes downs. And from getting back on Sunday evening til Wednesday, I was feeling very flat indeed. It doesn’t do me any good to ponder on the could have beens but when you are in a grump, you tend to focus solely on all the crappy things that are happening and magnify them until you can’t see past them. And yes, there are certainly some crappy things happening in our life. Tilda is well, before you worry about her! She continues to do well with her feeds and has put on lots of weight. Smiling and laughing and generally being delicious as always. Thankfully. However, as I said, when you are in a grump, those things don’t get a look in. On Monday and Tuesday, I focused on the crappy things and the could have beens and the woe is me and the why, why, why.

What a bore.

Thankfully on Wednesday, after chats to wonderful friends and a glimmer of the sunshine here in Melbourne, I was able to move past the crap and once again focus on what we do have. Which is loads.

I don’t have too much else to report on so thought I would again show off some Tilda of old because although it is heartbreaking to see how much she has changed, it is also so very nice to remember.

No news is good news!

7 May

And so it would seem in the last couple of weeks! Tilda has been doing really well since coming out of hospital and the new feed regime seems to be working out. We have had no vomiting and a steady and very welcome weight gain. We had a couple of appointments last week, with the gastroenterologist and our pediatrician, both of whom were very pleased with how she is going. I am thrilled to announce that Tilda is now the correct weight for her height, 10th percentile but still! We are rejoicing in her fuller face and not so knobbly knees.

Research Meeting in Sydney

It was lovely to be in Sydney last week, I met the wonderful Vanessa – the woman behind the Australian chapter of the BDSRA and the rest of the research team – 8 in total, all doing various research into the different forms of Batten across Australia and New Zealand. It was a productive meeting but did highlight to me just how small this orgnisation is and diffiicult it is to get things off the ground. It would be amazing to have the resources to do what we want to do but at this stage, we just don’t. The research team reported back from the recent London conference – details of which can be found here. Some discussion points were

  • How to separate ourselves from the American chapter so that we have some control over where funding money can go
  • The need for a national database of those affected by Batten disease with comprehensive details on methods of diagnosis, treatments, variants etc
  • Linking to Philanthropy Australia to find potential funding opportunities.
  • Networking with relevant organisations to ensure they know of BDSRA
  • Linking in to clinical trials that are already being conducted
  • The need for a paper on the Strategic Direction that the Research Commitee want to undertake

It was a starting point and I look forward to continuing my involvement and hopefully watching the organisation grow in such a way that it is able to undertake more research in Australia in a really meaningful way. I will keep you posted!

New Friends

I have been very lucky to have recently met another very special Batten mum, Nicole and her small one, Jack who is 4 1/2. We only met a couple of months ago but the bond was instant and I feel like we have been friends forever. Matilda and Jack also seem to have a very special bond and you can see that they really enjoy spending time together.

Tilda smiles and laughter are what we live for and thankfully we get them in abundance.

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