Daisy's first afternoon back at school

We are trying to take Daisy to school for 2 -3 afternoons a week to coincide with her breaks from TPN - I stay with her for the session as she is still so medically fragile but as you can see from the picture she is so happy to be back, even though all she can do is sniff and lick the crisps on her plate! (you can see the line to her enteral (milk) feed pump at the back of the chair - my role at school is basically to follow her around with the backpack containing the pump - from Global Brand Manager to official bag carrier....)


  1. I am so over the moon for you all that Daisy is having some breaks off tpn and made it back to school for a bit :)

  2. Thank you so much for your blog! In the last few days I've read every entry. My daughter has just been diagnosed with Costello Syndrome.

    You have the an absolutely gorgeous daughter... I hope she continues to improve in leaps and bounds!

  3. just to reassure you a lot of what Daisy is going through is not "typical" costello syndrome. Feeding issues in the early days, yes, but as they grow older many, many grow out of it and Daisy is the only CS child on permanent TPN. Have you connected with the listserv - they are such a great group and so reassuring. Do get in touch if you have any questions & good luck xxx

  4. Anonymous10:28 pm

    Steph so pleased to read that Daisy came home and is back at school - everytime I read your blog I always end up in tears - today, thankfully they are tears of joy for you. Looking forward to seeing you on Thursday. Love Alison xx