First Day Back

3 Feb

She boarded the bus with a smile so that was a good start! And no phone calls throughout the day. The bus was due home at 3:30 so at 3:45, I was pacing a little bit. When I heard it coming up our street, I ran outside to greet her. She looked completely spent and a little bewildered. After bringing her inside and having a little lie-down with her on the bed, she started to smile. Because of the timings, I knew that I had to get a feed into her before she could have a sleep so back to the TV and a little sit down. After the feed, I took her straight into her bedroom and she is currently fast asleep. I expect that she will have an hour or so and then we can have another feed and a bit of a play before going to bed for the night. This new routine will take a little getting used to for all of us.

Reports from school were that “Matilda seemed pleased to be back and gave us some lovely greetings when she arrived. We had a happy relaxed day. Matilda went to the multisensory room, enjoyed music, stories, ball games and going for a walk with her friend Ethan in the afternoon”

Good news!

In medical news, our appointment with the pediatrician yesterday showed that disappointingly, Matilda has not put on any weight yet. We have now  adjusted her calories again and hope that this will do the trick. It looks like the PEG surgery won’t happen much before the 2nd March, possibly a week or so before but we now need to establish that she IS gaining weight so yet another hurdle to overcome.

She is still smiling though and that for us, is really the only thing that matters.

xo

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4 Responses to “First Day Back”

  1. Caroline Pascoe February 3, 2012 at 4:37 pm #

    Laura,
    Fantastic news about school! I think of you guys regularly and it’s so great to hear your positive updates and our hearts go out to you during the tough times. You are all inspirational. Love Caroline (Fyfe) and Duncan Pascoe

  2. Juliet February 4, 2012 at 2:47 pm #

    I am so glad the school day went well! I am sure the new routine will be hard, but what a relief that you weren’t called in because she was hating it, or sad. Fingers crossed for the surgery AND a weight gain. AND I hope Tilda continues to enjoy school and the extended company that brings. All my love

  3. Terri Beggs February 5, 2012 at 7:30 pm #

    Laura,
    I keep Tilda’s beautiful laughing smile in my thoughts. I know it brings strength to all who see it. You are an amazing person Laura and I hope the next few weeks will bring some positive outcomes in Tilda’s weight and spirits. When she is smiling I know it must give you strength. Our thoughts and the golden light of positive energy are winging there way to you.
    Terri & Roger Beggs

  4. Cally February 6, 2012 at 3:04 pm #

    Good news about Tilda and her first day back at school and smiles.

    Love Cally Xx

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