Surgery done

8 Feb

Just a quick update to let everyone know that the surgery went well. The PEG is in and though Tilda is not particularly happy, it is so nice to see her little face without a tube coming out of her nose! She is in a bit of pain, had some morphine yesterday and panadol throughout the night. Thankfully, Dora is able to bring a smile to her face.


Whilst she was under the anaesthetic the ophthalmologist took the opportunity to have a look at her eyes and the good news is that everything looks normal. One of the key symptoms of Batten disease is vision loss so we are so pleased that hers seems to be holding steady.

I am at work today and Simon is holding down the fort at the hospital. It looks like she may be in until Friday or Saturday.

Thank you all for the good wishes and messages of support.


12 Responses to “Surgery done”

  1. Cally February 8, 2012 at 9:47 am #

    Thank you for keeping us in the loop.
    Fantastic news that Tilda’s eyes are good.
    And that the PEG went OK.
    Tilda will now be able to put on weight and be healthier with the PEG.
    Sending you all loads of good and positive thoughts and prayers.
    Love Cally

  2. Carole and Garry Laird February 8, 2012 at 10:44 am #

    That is good news to hear. Thinking of you all. Love Carole and Garry

  3. Jennie Deane February 8, 2012 at 11:24 am #

    I’m so glad the surgery went so well Laura. How nice to have Tilda without the tube!! What a brave girl she is!

  4. Juliet February 8, 2012 at 12:10 pm #

    Great news, and I hope the pain subsides fast. So good to know that she can still see Dora (AND YOU AND SIMON) clearly. Love to you all

  5. Anne Bunting February 8, 2012 at 3:00 pm #

    What excellent news both about the PEG and Tilda’s eyes. This should help you regain some strength and build up your reserves again. love to you all

  6. Jac February 8, 2012 at 3:50 pm #

    Great news! Speedy recovery now, I hope!

  7. Milli B February 8, 2012 at 4:51 pm #

    Great to hear guys! Kisses to my beautiful little girl xxx

  8. jackie February 8, 2012 at 6:57 pm #

    Brave Tilda! Thinking of you all xx

  9. Stella F February 8, 2012 at 11:09 pm #

    So glad to hear she’s recovering well!! Sending love xxx

  10. Benita crocker February 9, 2012 at 10:50 am #

    Well done to Tilda and what a relief to finally have it done. Kisses and hugs as always xox

  11. Diane February 9, 2012 at 3:00 pm #

    Pleased to hear that it went well. I’ve been wondering is there is a ‘real’ Dora/character. Can a few of us band together and have ‘her’ visit Matilda? And, will you give me some more detail on the March Battens disease conference. I’d like to make sure that Annie’s ABC program covers it. Hugs to all. Di XXX

  12. Alicia Brown February 10, 2012 at 8:56 am #

    That’s great news!! I hope it makes life more enjoyable for you all now. You are an inspiration!

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