Thank you

16 Dec

Thank you for all your wonderful comments, emails and messages after the last, fairly sad, post. They are an absolute balm and I appreciate them so much. There will be times of sadness, times of okayness and times of happiness. And that is just the way it is. We can feel you all out there though and that drives us everyday.

We are trucking along okay – very much looking forward to the end of the term and a well-earned break. I will be working in between Christmas and New Year but then have the whole month of January off! Tilda is getting a bit tired so a break from the hurly burly world of school (and waking up for school) will be most welcome.

We had our appointment with the neurologist yesterday and have a plan to try a new medication, Keppra, for Tilda’s seizures. Our neurologist showed me a copy of Tilda’s last EEG – out of the 10 seconds that were shown, there was only 1 second where she wasn’t seizing. I honestly don’t know how she copes with all that is going on her head. And with a smile! I am eternally grateful for that.

Our next appointment is Tuesday to talk about the dreaded PEG feed which has now become inevitable. Tilda’s eating had improved but unfortunately, she has gone back to her old ways, only eating dinner 1 night out of the last 3 and that was because it was Popcorn Chicken! Child cannot live on Popcorn Chicken alone. And I am sick to death of the very sight of the stuff! We did get a great recommendation for a supplement that has no flavour so can be added to sweets and savouries. I shall certainly be giving that a try.

To close, I would like to show off some more photos taken by the lovely Nancy from who certainly captured Tilda’s incredible spirit. These photos will be treasured forever. Thanks Nancy! And thank you to the amazing Heartfelt organisation for making it possible. Heartfelt bring together amazing photographers (like Nancy) to give the gift of photographic memories to families like ours.


14 Responses to “Thank you”

  1. Danielle x December 16, 2011 at 12:56 pm #

    Those photos are sooooooo divine!!!!! Man I love you guys!!!

  2. JessB (Kate's friend) December 16, 2011 at 1:29 pm #

    I can’t help but laugh as I look at these photos – how gorgeous! I have only met Matilda once, but even then she impressed me as a lovely, cheerful lass. And these photos are classics, she looks like she’s having such a ball!

    Stay chipper xo

  3. kylie December 16, 2011 at 2:17 pm #

    such lovely photos. so sweet. xx

  4. Margaret Black December 16, 2011 at 4:59 pm #

    Wonderful photos, she really looks beautiful. You are both so amazing and get so much pleasure out of your little girl. And she is certainly benefiting from your great care. Keep those great spirits up.

  5. Maria Munro December 16, 2011 at 8:48 pm #

    Wonderful memories, Laura.

  6. Stella F December 16, 2011 at 8:50 pm #

    Such a gorgeous girl!!!!!!!! xxx

  7. Carole and Garry Laird December 16, 2011 at 10:55 pm #

    Hi Laura and Simon, what wonderful photos for you to treasure.

    We hope you enjoy Christmas and New Year and Laura your month off with Tilda in January.

    Love to you all

  8. Isabella Godbert December 17, 2011 at 9:13 am #

    Wonderful photos, wonderful memories she is an amazing girl with wonderful parents.
    Lots of love

  9. Jan Marshall December 17, 2011 at 11:59 am #

    Isabella has got it absolutely right. In the midst of all the Christmas frenzy it is time to reflect on what is important and really enjoy the ‘now’. Tilda is just beautiful and despite all that is happening she gives so many so much joy.
    Have a wonderful Christmas.

  10. Juliet December 17, 2011 at 3:10 pm #

    Fabulous photos of a wonderful little girl and amazing parents. They are all great, but the one of the three of you is especially good, in the emotions it captures. I hope the dreaded PEG is less traumatic than you fear. All my love.

  11. Helen F December 17, 2011 at 9:34 pm #

    Such beautiful photos! That cheeky smile is simply gorgeous. Hugs to you all, as always xox

  12. Cally December 18, 2011 at 4:53 am #

    What fabulous photos!
    Tilda still smiling, still happy- despite the seizures.
    Takes my breath away.

    Have a great Christmas break.
    May 2012 hold promise for you all.

    Love Cally xxx

  13. Adrienne Gilligan December 18, 2011 at 8:32 am #

    Stay strong and cherish the beautiful moments.

    Lovely, moving images Nancy.

    Adrienne (Heartfelt photographer).

  14. Daryl Linnane December 18, 2011 at 10:44 am #

    Laura……. superb photos of a beautiful happy and contented Tilda…… and of you and Simon with her. You are indeed two very special parents who enable her to enjoy and be all that she can ……love Daryl

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