1 Feb

Well.  Whether the antibiotics have kicked in for Tilda, whether it is the few hours away from me yesterday (thanks Mum!), whether it is the collective loveliness and well wishes of all of our wonderful friends and family, we have indeed had a better day. Something kicked in yesterday afternoon – I had a couple of hours away and saw The Muppets (highly recommended – who can be sad when there are Muppets in the world?) and when I got home, Tilda was full of cheer, reaching for cuddles and generally much more like the Tilda of old.

It continued at bathtime, where she had a grand old splash about and then after lots of giggling on the bed whilst getting into her pyjamas, she led me NOT to the television as per usual but to the blackboard where we spent a lovely 1/2 an hour playing with chalk.

Today, lots of smiles. We had some visitors (thank you very much for the food Pete and Treen!) and her mood has stayed up all day. HOORAY!!

Thank you all for riding this roller coaster with us. I know that when I post something sad, it is felt by you all and I so appreciate all the messages, texts, and calls of support. It really is a matter of day to day living and this day was a pretty good one. I know that there will be dark days ahead. But I also know that I have to take the good moments and hang on to them tightly.

We have an appointment with our pediatrician tomorrow where we will hopefully confirm that she has been putting on some weight and even more hopefully get some news about a possible earlier date for the PEG. And then school starts on Friday! I am equally hopeful and anxious about the first day but know that she will be in excellent hands.

In other stay posted news, we will soon be gearing up for Batten Disease Awareness Day on the 31st March. Plans are being made for some kind of bbq type event with monies raised to go to the very important BDSRA. I will keep you posted.

much love



16 Responses to “Smiles”

  1. Jac February 1, 2012 at 7:30 pm #


  2. jackie February 1, 2012 at 7:32 pm #

    YAY for happy days, a lesson for us all to take the time to spend QT with our kids, half an hour playing with Tilda and chalk sounds like so much fun! Great to hear it has been a good day! xx

  3. Clare February 1, 2012 at 8:02 pm #

    and the rollercoaster ride continues……hold on- but glad to hear its headed in the positive direction today 🙂

  4. Liz Thomas February 1, 2012 at 8:04 pm #

    Laura you write so beautifully.
    Our thoughts are always with you and Simon and your treasure Matilda.
    Much love Andy and Lizx

  5. Daryl Linnane February 1, 2012 at 8:26 pm #

    So, so happy for you all that Tilda has bounced back and is again full of smiles and good cheer !! She surely must take after her parents in the resilience and determination “stakes” . Hope the resumption of school on Friday brings even more positivity. But….good days or bad we forever hold you in our thoughts and hearts…… Daryl

  6. Emma February 1, 2012 at 8:37 pm #

    Extremely pleased to hear that Tilda (and mum) is back on track!! An honorable mention goes to The Muppets; keep up the good work!

  7. Helen F February 1, 2012 at 9:06 pm #

    Sending you much much much love. I hope you are feeling a bit more of a manly muppet now, rather than a muppet of a man (I like to think we are all really the former). Glad to hear Tilda is feeling better. Sending some of the Alice sun down your way xx

  8. Anne Bunting February 1, 2012 at 10:10 pm #

    Fantastic news – fingers crossed for equally good news from the doctors and a positive start to a new school year. Xxx

  9. Danielle x February 2, 2012 at 7:01 am #

    What a lovely way for me to start my day! Love you both to bits x

  10. Juliet February 2, 2012 at 7:21 am #

    Terrific! and 31 March is in my diary. I do hope school goes really well and Tilda is happy with the activity and the company. Lots of love

  11. Cally February 2, 2012 at 8:21 am #

    You poor darlings- you have been on such a complex journey.
    With the heart breaking news of Tilda not responding as Tilda, come the sweet words of small joys and small improvements.

    Bless medical discoveries like antibiotics to help Tilda.
    I hope the doctors appointment today gives some cheer.

    I have been away from work for the last 6 weeks but following your blogs.
    If I could- I would- give you a warm hug.
    Twice or three times.

    Still sending daily healings…
    Love Cally xx

  12. Benita crocker February 2, 2012 at 8:37 am #

    Well mate it took me more than a day to try to respond to the last blog – couldnt’ quite find the words but this is much easier…YAY to good days and cuddles!! Keep the posts coming good or bad – we are all here, every step of the way xoxoxo

  13. Waidehi February 2, 2012 at 11:03 am #

    Hurray and Yipee and masses of love to all of you! xoxox

  14. Milli February 2, 2012 at 11:23 am #

    To my beautiful sis, brother and little Tilda…so happy to hear that Tilda is all smiles and giggles once again! Sending all our love and support and best wishes from afar!!! Charlie sends a million huggles & kisses to her big cousin xxx

  15. Ken and Wendy Brown February 2, 2012 at 4:02 pm #

    So glad Tilda’s smiles have returned. We send on our love.

    Ken and Wendy xxx

  16. Carole and Garry Laird February 4, 2012 at 10:20 am #

    So good to hear Laura.

    Love to you all from Carole and Garry

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: