We went for Seabass’ check up at Alder Hey today.
I’m pleased to say that all appears to be ok and the shunt seems to be working. We have to go back in a month for an MRI to check the cyst, hopefully after that we won’t have to go so often.
Now we can concentrate on enjoying doing normal things with him and trying to catch up on some sleep – though I think some of us get their full 8 hours a night!!
So, for the fundraiser, I’m thinking of organising some sort of charity afternoon/evening with food, drinks, raffle etc. I think this will suit the majority of people then we can organise a sportier event for those who want to take part. I shall start making some enquiries. The majority of the money raised, we’d like to go to Alder Hey for the way they’ve looked after Seabass. Then there are a couple of other organisations we’d like to donate to. It’d be great to get as many people to come to the charity event as possible, so once a decision on the final event has been made I’d be grateful if you could spread the word.
Thank you again for all the support you’ve shown us.
Massive hugs and love to you xx
Don’t forget to follow us on Twitter @bumpsbrain and Facebook for updates that don’t require me writing a rambling, great big blog post. You can also see pics of how the little man is doing xx
We’ve just been to the hospital for Seabass to get his wounds checked etc.
All is going well. They said the shunt is doing its job and his head measurements and weight are going in the right direction. Huge relief. Now we can relax a little, I hope, and enjoy ourselves.
It’s now a case of seeing how he progresses. We’ve been told he probably won’t attend mainstream school, but who cares?! He’s here and such a cutie, that’s all that matters. No matter how he develops, he has so much love around him that he’ll be a happy little boy – I’ll make sure of that.
Keep checking the blog to see how he’s getting on. I’d love to carry on sharing his journey with you.
Massive hugs to everyone from all of us.
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.
Seabass must be feeling a lot better, he was wide awake all night – kicking, looking around, feeding and gurgling. I hope this new, more awake, baby is a sign of things to come (just not at night).
He is looking around more, seems more alert, is crying less as the hours go by, and seems to be trying to smile.
Although we were told before he was born that he wouldn’t be able to feel the cyst, I can’t help but think that maybe that was said to stop us worrying. If he had a large pressure build up, he must have had headaches. Hopefully this shunt has brought and end to those now.
We’re meant to be getting sent home today. It’ll be nice to try and get on with things now.