We’ve had a couple of days at home now. Seabass seems a lot brighter and has even been managing a few smiles. When he’s awake now, he seems so much more alert and we get to see more of his big, beautiful eyes.

Tinkerbell is also back from her holiday, she was excited to see Seabass and I’ve been trying to explain the shunt to her. I don’t think she fully understands but she is only 5. We have a little information pack from Shine given to us by the hospital. It includes a storybook about Benny Bear who has a shunt. I read it to Tinkerbell and explained to her what we have to look out for in case Seabass’ shunt breaks. The Benny Bear stories/club are a good way of explaining things to children. For adults, all the information about shunt malfunction can be found on this download, in case anyone wants to read it or knows someone they want to pass it on to.

It’s going to be difficult trying to find a balance as Seabass gets older between trying to protect him and his little head, but not drawing too much attention to it and making him feel self conscious and different from other children. Though maybe I shouldn’t worry about that too much. I always panicked before Tinkerbell started school that her symbrachydactyly would make her a target for being picked on by other children, but so far everything has been good and it doesn’t bother her in the slightest. She has things that she finds more difficult to do, but she takes it pretty much in her stride. I think she will be a big help to Seabass as he gets older in showing him that you can’t let something hold you back, you just need to find a way to adapt. I’m very proud of the both of them.


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