Decided to try and do a bit more promotion of my blog this weekend. Started with a bit of a search on Twitter to try and find similar people – two I found who mention arachnoid cysts in their children. One of whom looks like she’s struggling to get her message out like me. Obviously everyone that already follows the blog has already been supportive, I don’t want people to think I’m ungrateful for your kind words. It’s just hard not being able to find people who might have this cyst. I just want to know how our baby will be affected. I want someone to say to me “we went through exactly the same thing and this is how it has turned out….” I want to know what we are dealing with so I can research the conditions, get in touch with relevant charities/support groups and make sure that we look after Seabass as best as we possibly can. We have no experience in dealing with children with disabilities, what if we balls up? I want him to have the best quality of life that he can with whatever this cyst decides to throw at him. I want to know how to explain things to Tinkerbell in a way that she understands. Seen as she’s decided that she’s in charge of looking after Seabass (except the nappies part), she’s going to have to know what to do.
I have had a message from a lady at the Epidermoid Brain Tumor Society in USA which I need to respond to. She may be able to put me in touch with someone that sounds like they’re going through something similar. That’d be really good to speak to someone who knows the same emotions you’re going through. It would also be good to share stuff as we progress through our pregnancies.
We were told that from the 34 week point the doctors will weigh up when is best to deliver the baby. The 34 week point is 24 May – that’s 6 weeks and 5 days, which freaks me out slightly. It’s not long at all and we’ve not organised/bought anything.
We have our next Fetal Medicine Unit appointment on Thursday, fingers crossed the horse racing wasn’t a bad sign and let’s hope the cyst still hasn’t grown much.
Until then I shall enjoy my time off with my family and then start to panic on Wednesday night.
Hope you’ve all had a good weekend xx