Archive | February, 2013

Days go on

22 Feb

The sadness continues around us, our dearest Jack is still fighting hard and several other Batten children around the world are also fighting. It is a harsh reminder of what this disease ultimately does to our children and it is something that I cannot seem to connect with Matilda. Denial, denial, denial.

I am not naive though and I know that the worst for us is yet to happen but denial allows me to rejoice in the days that we have, in the smiles and in the laughter. I cannot and will not let Matilda’s ultimate fate overshadow our life now.

In health news, we seem to have a handle on the vomiting. We introduced a new medication and have been slowly increasing feeds over the last couple of days. The chatting continues. Sometimes through the night, as experienced on Wednesday night when she woke up every hour….Thankfully, that seems to be a one-off and she only woke once last night.

School is such a good place for her. She comes home ready to smile and laugh and I know she has had a good day.

Her and Maggie also seem to have their own way of communicating with each other.


And so our days continue. We are thinking always of the families whose children are fighting and send them all our love.




16 Feb

More children were lost to Battens this week. I am not sure of Deon’s age or what form of Batten he had. I do know that his family have the added tragedy of having already lost Deon’s older brother Terrell to Battens a few years ago. And only moments ago, I found out that  Alexia from Argentina has also passed away.

The Batten community is small and each child’s death sends shockwaves and sadness. We believe we know what is coming for our own children but each death makes it more and more real.

Other Batten children are fighting – our own dearest Jack is currently at Very Special Kids with his very special mum. She has been given the heartbreaking news that Jack is in the end stage of this horrendous disease. There has not been any clear timeline given and he continues to fight hard. Please have this family, who are very close to our hearts, in yours over the coming weeks.

In further sadness, for those that read this article in a post last year, I am sorry to report that Ronan passed away on the 15th February, age 3.


And yet we bear. Decisions are made that you cannot believe you even have to make. Recently, there was a bit of in-fighting on the Batten Facebook community page. Disagreements about how one should be and what one should feel in the face of the unstoppable. Filling in a Do Not Resuscitate form for your child was what sparked the flames and it is understandable that people have different views. I strongly believe, however,  that each family will do what they believe is best for their child and that no one else has a right to any kind of judgement for that.

We have filled in such a form. In a haze of tears. I imagine that is something that we will have to revisit when we are we closer to the end. I don’t pretend to know how I am going to feel when the unthinkable happens but I certainly do not expect to be judged for the devastating decisions that we may have to make.

We are a ways off that I believe although Tilda has given us a few scares over the last week or so. The vomiting has continued and her nutrition has now dwindled to a paltry 300ml a day. We have seen some increase in seizures and another episode of distress. However, in the last couple of days, she has regained some spark.

At school, her teacher has been absolutely thrilled with her progress in the Intensive Interaction program. Previously, Tilda had been somewhat passive during the sessions which basically involve a lot of one to one interaction but in the last couple of days, her teacher has had a breakthrough and was delighted to report on Friday that

‘We had a great morning with Matilda – she was awake and happy and VERY vocal – it was fabulous. We are so excited with this communication breakthrough – it is lovely to hear her voice at last.’

This has continued at home, with Tilda being VERY loud, A LOT! With added bonus of lots of smiles and lots of giggles. It is lovely.

We have touched base with our paediatrician in regards to the vomiting and have a new medication to try as well as a new seizure medication if we start seeing an increase again.

But for now, we rejoice in our smiling girl.

Smiling Tilda

Two children

4 Feb

Like any mum of two, I find myself sometimes being caught between them. If I am home alone with both Maggie and Tilda and Maggie is screaming and Tilda needs her medication, there is a definite rise in the stress -o -meter. It isn’t like either of them understand the concept of just “hanging on a tick”.

Thankfully, with the second child comes a whole lot less anxiety about them. I know that leaving Maggie to cry for a bit whilst I sort out Matilda is fine. She will be ok, her cries don’t bother me nearly as much as Tilda’s used to but sometimes I do feel like a bit of a yo-yo bouncing between them and it certainly has made me think about the difficulties of adding yet another child to the mix. Two is doable, three would be very, very tricky.

Having Tilda back at school certainly makes things a bit easier and I am pleased to report that she is once again really loving it and coming home with a smile. Unfortunately, we do have a return of the vomiting and so have been adjusting feed times and rates to try and alleviate it as best we can.

Tilda has a new teacher this year and is in a new program. Instead of the usual learning colours, numbers etc -which, let’s face it, is not going to be all that useful for her – she is now under the Intensive Interaction program which concentrates on helping her with communication. I think this is a great idea and look forward to seeing what results it can achieve. She will continue with all of her physiotherapy and beloved swimming which is great.

Tilda at school


Maggie continues to grow, she is currently a bit spotty and gassy so not particularly attractive but a delight nonetheless! We are now getting regular smiles and Tilda seems to be a firm favourite.

Tilda and Maggie



Awesome t-shirts courtesy of the lovely Emma – many thanks!!

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