Focus on the good

29 Dec

I love Christmas, I love everything about it from the cheesy decorations to the big family get together to the enormous amounts of food that is on offer. The last few Christmas’ have been pretty tough though. 2 years ago, Matilda was diagnosed with epilepsy a few days before Christmas. We were in Darwin and I felt very homesick. Last Christmas, we were a month into the Ketogenic Diet and struggling.

This year thankfully, was great. Kylie and Tim did a fantastic job of hosting the massive Christmas lunch. The food was delicious, the beers went down a treat and we even had a White Christmas thanks to a freaky hailstorm after a morning of sunshine! It was so wonderful to see all the family in particular my delicious cousins Stella and Isla who flew in from London. Tilda had a ball. We spent Christmas Eve night there so she got quality time with Thomas and Charlie and she was in fine fettle. She has recently rediscovered the word “Yuck” and finds it completely hilarious!

 After a day of eating too much and then having lots of red wine with my sister Christmas night, we spent Boxing Day at home and had a very peaceful day. The next day, we headed up to Gisborne to spend the day with Simon’s family. Simon’s sister and partner Michelle have made Tilda the most amazing present. I am blown away by their talent and thoughtfulness. For want of a better term, it is a playchair for her. Somewhere she can sit and be part of the action, have all her toys around her and be safe. Thank you so much guys. And apparently this is just the prototype!









I think they need to patent this!

General Health Update 

We had our follow up appointment at the Royal Children’s Hospital this morning which went much better. We now have a clear understanding of what the PEG operation will involve. Unfortunately, because Tilda’s eating has been so sporadic over the last few weeks, we have made the decision to go forward with a Nasal-Gastric tube while we wait for the PEG surgery. We will therefore be going into hospital next Wednesday to have it inserted and have some training on how the feedings work. Hopefully, we won’t have to wait too long before she is able to have the PEG.

I am trying to focus on the good. I know that this will mean that Tilda will easily be able to be fed and medicated. No more battles! No more anxiety about whether she has eaten enough. It will remove all of that. And, I really don’t think that it will bother her that much. She has had one before and was not fazed. She will still be able to eat by mouth (beloved Popcorn Chicken!) but won’t have us hovering around all the time trying to shovel food into her.

Focusing on the good is good. But of course, the whole reason for this is bad, bad, bad. It is yet another progression in this shitty disease. And it completely sucks.

In happier news, the topomax wean is complete and so far the new medication, Keppra, seems to be doing something. We are seeing less myoclonics which is definitely a good thing to focus on.

Happy New Year to one and all – my hope for 2012 is for a year where NOTHING happens. Boring. Quiet. No changes. Perfect.


8 Responses to “Focus on the good”

  1. Nancy Morrison December 29, 2011 at 3:08 pm #

    Perfect! That is my wish for you and your gorgeous family too.. ❤

  2. Juliet December 29, 2011 at 3:33 pm #

    Christmas Day was certainly amaaaazing. Thanks and congratulations to all who made it so!

    And that play-chair is the most wonderful gadget I have seen for ages. It certainly should be patented, so that it can be taken up commercially. There must be so many chilfren, not just Batten’s sufferers who would benefit. Where are the New INvenors when you need the programme!!

    I hope the naso-gastric tube proves as unproblematic as possible and that it improves Tilda’s intake no end.

  3. Carole and Garry Laird December 30, 2011 at 5:18 pm #

    Happy New Year to you Laura, Simon and Tilda. We hope 2012 is good to you all.

    Love and best wishes

  4. Anne Bunting January 2, 2012 at 6:48 am #

    Sounds like a great Fabinyi type Christmas – you certainly deserve a good one after the 2. Hope all goes well at the hospital tomorrow and that this makes life a bit more manageable for you all Love Anne

  5. Cally January 2, 2012 at 7:34 pm #

    So nice to hear of your lovely Christmas. Brought a tear to my eyes.
    Love the photos.

    Bless you three.

    Love Cally Xx

  6. Stella F January 2, 2012 at 8:22 pm #

    So good to see you Laura!!! You’re such a light xxxxxxx

  7. Waidehi January 6, 2012 at 12:20 am #

    That play chair is just incredible!! And the ‘yuck’ giggles are adorable!! x0

  8. Isla January 6, 2012 at 10:11 am #

    It was so so so lovely to you see you, Simon and Tilda at Christmas! Hopefully its not as long before I see you again xxxxx

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