Archive | September, 2013

Busy School Holidays

25 Sep

School holidays are once again upon us and thankfully Tilda, for the most part, has returned to her usual smiling self. She is once again tolerating her full feeds and has colour back in her cheeks. An absolute trooper.

We have seen laughter most days although today she has been a little out of sorts. There has been a lot going on though so she may just be plum tuckered out! We’ve been to the show to watch her cousin march in his marching band.

At the Show

At the Show, waiting for the Marching Band









We’ve been to the pool for a swim


After a swim at the pool












And we’ve had two family birthday celebrations to attend, with all the chaos, colour and craziness that happens when you get us all together!  – Happy Birthday Thomas and Happy Birthday Ben! And we still have another week of holidays to go!

School holidays bring with them a lot of mixed feelings for me. It is when I get to spend extended periods of time with Tilda which is wonderful but also tough. Tough because I am ever constantly reminded of how much she has changed and on days like today when she isn’t as responsive as I would like, it hits me again and again. I realise how much Tilda’s moods affect my own and I can only hope with every ounce of me that her path allows her to smile and laugh and experience joy until the very end.

I would wish that for everyone really.

Next week, we have an appointment with our paediatrician and then Simon and I are swanning off on our own for two nights which is tremendously exciting! A huge, enormous, gigantic thank you to my amazing parents who have facilitated this and who are being very brave and looking after Maggie for both nights!  Tilda will be in Very Special Kids which I know she will enjoy and I will once again put aside my mother guilt and enjoy sleeping, eating, reading and relaxing, returning to my children a better Mum for it!

much love



A little word about Maggie

19 Sep

Who is 9 months old today! This child is a joy and delight and we are so thankful to have her in our life. Although she is the cause of much of my tiredness, it is virtually impossible to remain grumpy with her for any extended period. Smiley, cheery, inquisitive, funny, delicious child. In years to come, I want her to know what a balm she has been. How, on the dark days, she brings a light and how her smile can make any day better.
Although Tilda, like any good big sister, tends to either ignore Maggie or find her poking rather annoying, I remember how much she wanted a ‘baby sista’ and I know that she would cuddle her endlessly if she could.
We love you Miss Maggie!

Happy Birthday to our Beautiful Tilda!!!

10 Sep

Well, she made it to her party at least!  And then threw up later in the afternoon and had to come home but that’s ok. She is still obviously not quite 100% but I am very glad that she got to go to school, see her friends and have her amazing party.

Such a huge thank you to the Lovely Louise and the Amazing Amber for putting on such a feast. Please admire the absolutely stunning cake that her teacher Louise made with her own fair hand! It was completely delicious.

The beautiful butterfly cake


Getting ready for the party


Wearing her gorgeous Snow White coat





















Cuddles with Dad

Cuddles with Dad










Home and all done in













And a huge thank you for all the gorgeous presents she received, the text messages and the messages on FB – so much appreciated. And to the representatives of TeamTilda who were able to come along, thank you so much!! It was wonderful to be surrounded by fantastic friends and know  just how loved our gorgeous girl is.



Kind of a crappy weekend

8 Sep

And not just because the Tigers lost and Tony won. The vomiting has returned and with it, all the anxiety about the last week.

When things went downhill last Sunday, I went to a place that I hadn’t allowed myself to go yet. This is what I wrote that night:

This is the first time that I have allowed myself to go there. It feels like this is the sickest she has been. It feels like its enough. It is too much for a small one to bear. I know how strong she is and I know that she could rally. But for what? For a life marred by sickness, by seizures, by pain, by the loss of all the things that she held dear. Gone already the ability to walk, to talk, to jump, to eat. I fucking hate you so much you horrible fucking disease. Let her go. Let her go. Let her go.

That was the tired and stressed me.

I don’t want to let her go. I want to keep her. For as long as possible. But not at a cost that would cause her any distress, or discomfort. I will be led by her.

And in true Tilda fashion she has rallied amazingly well and showed me just how much she has in her.  We left hospital last Wednesday and things had been going pretty well until yesterday. And even since then, it has just been a couple of  small vomits. I should be used to it. But I’m not. The questions remain. Was it just because we had increased her feed? Will she aspirate and get another chest infection? The cough still sounds pretty awful and I don’t like it.

There is nothing to like about Batten disease. There is no light at the end of a tunnel. The only light to hold on to is her amazing smile, delectable laugh and always her tenacity.

Tilda turns 7 on Tuesday. 7 somehow seems so much older than 5 or 6 – perhaps because now I shop in the 7 years plus section at Target!

7 also scares me. Too many Batten kids have died at age 7. A year or so ago, Simon and I had a no holds barred conversation. She had just come through her first chest infection and honestly, at that point, we didn’t think we would get to see her at 7.

So, we are thankful to be here. Thankful for all the days that we have. Terrified of what is to come but doing what we do and living each day as it comes. Even through a crappy weekend, a crappy prime minister and a crappy footy result.

Watching the footy


Tilda watching the 1st half of the footy, before we started to lose!

Bring on Tuesday. Tilda’s amazing school is holding a party for her – a morning to celebrate, rejoice and bask in her awesomeness. Thanks to her beautiful teachers for putting it on, we can’t wait!


PS I am sure Simon would like me to add that he thought the footy result was fantastic!



4 Sep

We are home! Feeds have been tolerated and there really wasn’t much they could do for her in hospital so we were able to head home earlier this afternoon. Tilda is going along ok, she is still quite snoozy and the cough still sounds pretty dreadful but certainly she has improved from when we were admitted on Sunday.

Happy to be home and in her own bed!

In very sad news, we learnt tonight of the passing of Marcus, age 6 from Melbourne. Please have his family in your thoughts at this awful time. This disease is ruthless, and terrible and heartbreaking. And our own recent scare has brought it rather too close to home.

We rejoice in those smiles and hug her extra hard tonight.

Changing of the guards

3 Sep

I have come home and Simon has gone into hospital to be with Tilda who is doing very well. They have started a slow feed and she is tolerating it at the moment. She had a nebuliser treatment last night which she also tolerated really well.

Tilda having a nebuliser treatment


This is used to help break up the gunk in her chest for her to cough. Thankfully, she still has a very strong cough and is able to shift things well. She is looking much, much brighter and we got some more smiling which was wonderful.

Smiling TildaShe is a true fighter this one. It looks like we will be in hospital just a couple more days. We just need to make sure she tolerates her feed and get her off the oxygen.

Many thanks for all the good wishes.


Hospital update

2 Sep

Its the flu. Paraflu 3 to be precise. They swabbed her nose and we have a result. It does mean that the antibiotics are therefore not really doing anything but we are now just waiting again for the drs to see what we can do next. She is still on oxygen but is looking marginally brighter and Simon even managed to make her giggle a little.

She has tolerated gastrolyte well and though her cough sounds dreadful, she has not had another vomit since last night.

We will be here tonight. I suspect we will also be here tomorrow night as we slowly introduce her feed back.

Thank you for all the well wishes.


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