A mixed holiday

23 Jan

I returned last night from 10 days down at Anglesea, back to internet access, emailing and Facebook! Back to phoning hospitals, doctors and dieticians. The holiday was mixed. It was wonderful to spend time with my family and to be by the beach. Tilda had a marvellous time in the water, letting the waves crash over her legs.

However, we have seen a real change in her and not for the better.  It is hard to know whether it is the fault of the tube or whether it is this iniquitous disease showing itself again. Whatever the reason, Matilda has not been particularly happy, with bursts of lamb-like whimpering where we desperately try and figure out what is wrong. The analogy of having a new-born is completely apt again. Does she need a change of nappy? Time for a feed? Tired? Or, quite possible, is the wrong episode of Dora playing? I find this whimpering incredibly hard to deal with as it seems so far from my cheery, happy Tilda.

So I came back to Melbourne full of fortitude. Time for some calls. After being on hold to the RCH for over 1/2 an hour, I called our incredibly wonderful neurologist who works at the Austin. She happens to know the person doing the PEG surgery and after some to-ing and fro-ing, it looks like we may have progress on speeding it up. I am waiting to hear back, hopefully by tomorrow afternoon that we will be able to get her seen at the Cabrini, much earlier than the 2nd March. I asked if it was possible that this regression that we have seen could be because of the nasogastric tube and although it is not an absolute certainty, there is real hope that once the PEG is in, we will see a return to my Tilda of good cheer.

Thank you once again to all friends and family who have been so supportive. NO WAY could I do this without you.

I will post again once I have more news!

xoxo

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10 Responses to “A mixed holiday”

  1. Juliet January 23, 2012 at 2:39 pm #

    Fingers crossed for a speed-up in the PEG and fingers and toes crossed that it is indeed the tube that’s the problem.
    Welcome back to Melbourne. I am so glad that Tilda enjoyed the beach part of her holiday!
    All my love

  2. Kylie January 23, 2012 at 5:29 pm #

    That girl just wants to jump and splash and kick! And I love to do it with her!
    xxx

  3. Stella F January 23, 2012 at 6:26 pm #

    Keeping my fingers and toes crossed for you guys!! Xx

  4. Sam Spencer January 23, 2012 at 7:36 pm #

    Hi Laura, I have spent hours reading every post and watching every video and although there have been a few tears I have mostly been smiling and remembering the true spirit that is your beautiful daughter. I miss you guys a lot and think of you often. Please give a huge huge to Matilda from me. I know everybody misses her at uncle bobs but I loved reading that she is loving glenallen. Thinking of you as you get through the newest challenge of the ng tube and peg surgery date. We all want to hear that Matilda is back to her giggling happy self. All my love to you and Simon. Sam xxxxxxxx

  5. Cally January 23, 2012 at 8:10 pm #

    I loved the video clip, the waves and the sea and beautiful Tilda. A lovely video clip.
    I am so sorry to hear you are having a difficult time with the PEG tube and the loss of Tilda’s sunny disposition. And not knowing what she wants- as you said like a baby- wondering what is the problem is.
    My heart goes out to you all.
    I hope the new day is a brighter one for you all.
    Love Cally

  6. Bec January 23, 2012 at 9:46 pm #

    Great video clip! Good luck with getting an earlier date, thinking of you guys x

  7. Anne Bunting January 23, 2012 at 11:03 pm #

    Glad that you were able to have a bit of a break away and that you had some moments of Matilda thoroughly enjoying the waves. Not knowing what to do when kids are unhappy is always hard but hopefully the PEG wil get done earlier than anticipated and she will return to her happy self. take care and love Anne

  8. Benita crocker January 24, 2012 at 7:44 am #

    I was missing your updates Laura – welcome home!! At least we got a bit of sun down at the beach this year in Victoria. Hugs and kisses
    be

  9. Margie Dowling January 28, 2012 at 7:37 pm #

    Dear Laura and Simon I am constatly amazed by your courage, drive and positive attitude whenever the next problem rears its ugly head. Matilda is one tough cookie!!! Hope the medical procedures can help in some way – whenever you can get a definite time and date. Glad you had a break with your family at Anglesea, they are the best medicine!
    Lots of love and positive vibes from us
    Margie and Geoff

  10. rubydphotography January 30, 2012 at 3:51 pm #

    What a great video!! Love Tilda’s smile!!!! Thinking of you all! x

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