Archive | March, 2012

On the radio – Update

30 Mar

Hi everyone, just to let you know that the interview we did with the lovely Alison Caldwell will now be aired on Monday instead of today.

That’s all for now! More to report after Tough Mudder!!

Still plenty of time to donate if you haven’t had a chance  – Everyday Hero 

Thank you!



On the radio!

29 Mar

I am pleased and delighted to report that Simon, Matilda and I will be on your local ABC radio station on The World Today program tomorrow afternoon. The show starts at 12:10pm and I believe we will be on during the second half. The very lovely Alison Caldwell came to visit us this morning, to talk about Matilda and to talk about Batten disease. Thank you so much to Di and her daughter Annie for facilitating this. We spent ages chatting and I am hoping that I didn’t babble too much and even more that it will raise some much needed awareness.

Thank you again so much to everyone who has donated – we have hit the $3500 mark so I have had to raise my target! Simon is in serious carb loading mode for the Tough Mudder event on Saturday which looks like it will be a lovely day – photos to come!

Tilda is in excellent form – cheery and vomit-free since Sunday! We have a catch up appointment on Monday afternoon with our gastroenterologist to talk about possible reflux and we are still working with the dieticians to find a workable feeding regime.

More after Saturday!



22 Mar

We are still in vomitville. It isn’t a very fun place to be but I am comforted by the fact that Tilda doesn’t seem unhappy or unwell or otherwise affected. The culprit is likely to be either the higher calorie formula that she is on, or the sheer volume that we are pumping into her. Both factors are being addressed and hopefully, hopefully things will settle down soon.

I miss Tilda’s voice. I miss her words and the way she would say Maaaaaaaa-maa. Her husky voice that was only just starting to deliver her own thoughts and opinions before it all got cruelly taken away. There aren’t many words these days. Lots of noises though. She can get “Daddy” out with a struggle. “No” seems to have stayed the course. What would she say if she could?

There are times when the lack of words is overwhelmingly frustrating. In the night, she calls out with a noise. I don’t know what it means. She doesn’t seem unhappy. The current epidemic of vomiting – would she tell me that her stomach hurts? That the formula tastes horrible when she burps? That she is so unbelievably full so please stop feeding her? We don’t know so we have to guess. And try different things in the hope that something will work for her.

Communicating is such a vital part of us interacting with each other and though I know that Tilda communicates in her own way, with gestures and smiles and noises, I would so very much like to sit down and chew the fat with her. Her speech at age 2 was developmentally ahead and I eagerly awaited the days when we could converse together. We would muse on who she liked better, Dora or Diego or have an argument about which pink top she should wear. During the year between age 2 and 3, there was a definite lack of  speech development and after a developmental checkup just after her third birthday, we started the process to get some speech therapy. Looking back, I can see that she was struggling to put thoughts and sentences together.

(And check out the eating! Amazing!)

But even though her speech wasn’t quite where it should be,  I still looked forward to our future chats. As time went on though, her speech didn’t improve and then, once we got the Batten  diagnosis, words seemed to disappear at a rapid rate.

We have chats in my dreams. The other night, I dreamed that she was talking to me and the first thing she said was  “You know Mama, I actually don’t really like Dora at all!” I somehow knew that it was only a dream. 🙂

I wish I had captured more of her “before”. Captured all the words before they disappeared. For now, I have days when I can look back on the “before” videos and feel so grateful that we had that time. There are other days when watching them makes me weep uncontrollably, and still other days, when I cannot watch them at all. Today is a reflective day with no weeping but a feeling of wistful nostalgia. I am grateful for those “before” days but I am also grateful for today. Today, Tilda woke up with a burst of babbling and a cheery smile. She had been a little distant for some reason over the last few days but this morning, I was covered in kisses. Definitely something to feel grateful about.

Speaking of gratitude, I am also tremendously grateful to the wonderful people at Simon’s work who donated the proceeds of a friendly inter-team cricket match yesterday to the Batten Disease Support and Research Association. With the score a tie (bit of diplomacy going on there I think!), the total raised was over $1300 and still rising! Thank you so much to Jess for organising it and to everyone who took part.

Thank you so much also to everyone who has donated so far. We are inordinately grateful for all the wonderful people in our life and we cannot imagine going through this without the support you have shown us. If there is any consolation to be found with our situation, it is that it has brought the kindness of so many to light.

Tough Mudder is only 9 sleeps away and I am very  much looking forward to the spectacle! There is of course, still time to donate if you haven’t been able.

Everyday Hero Page

Thank you. And much love to all.


So much support

13 Mar

Thank you so much to everyone who has already donated or pledged and also to those who have posted the link to their Facebook pages. Your support is overwhelming, and wonderful, and we are so grateful.

Tilda remains in good cheer!! Which is the best news of all. The weekend before last, we went on an adventure down to Phillip Island, to scope out the terrain for Simon’s upcoming Tough Mudder escapades! It was a lovey day out and we were even able to dine out together at a cafe. No one seemed to bat an eyelid at our iv pole and feeding pump and it was so lovely to be able to do something so ‘normal’.


We felt so cocky that we thought we would go camping over the long weekend but unfortunately there has been a bit of vomiting from Tilda and we felt that vomiting and tents really didn’t go all that well together! Instead, we set the tent up in the backyard and had a stay at home camping adventure!

We’re not entirely sure what this latest vomiting development is all about. Possibly a bug, possibly some reflux. We have been in touch with the lovely dieticians at the Childrens and are trying out a few remedies. Hopefully this too shall pass.

Thank you again. If you haven’t donated and want to there is still plenty of time! Please also feel free to pass the link on far and wide. After all, it is all about awareness.

Batten Disease Awareness Day

Batten Disease Awareness Day – March 31st 2012

9 Mar

We are in a very good *knock on wood* place with Tilda at the moment. She is really happy and putting on weight and has returned with vim and vigour to the cheery Tilda of old.

It is a huge relief.

It means now we can take stock, and turn our attentions to the bigger picture. Which is of course Batten Disease itself. There is no cure for this disease. No cure. When we first found out about the condition and scoured the internet for information, these were the words that seared themselves into our brains. No cure. Always fatal. Our daughter.

I’d like to see more research being funded. I’d like some really, really, really smart people to be looking at this disease and figuring out a way to make it stop.

March 31st is Batten Disease Awareness Day. It is also the day Simon is undertaking the gruelling (but fun!) Tough Mudder event in Phillip Island, Please visit our fundraising page below to support him and the Batten Disease Support and Research Association.

Much love


Home again

2 Mar

And we are home again! We were able to leave on Wednesday afternoon with the site looking much better and Tilda much cheerier.

So cheery that she even went back to school! And seemed very pleased about it too.

Feeds and meds administrating are going well and we hope that we can continue to build up her strength.

I find it slightly ironic that today is the original date for the PEG insertion. It seems we are where we are meant to be. 🙂

Onwards and upwards for a dull and eventless March.

%d bloggers like this: