Had the appointment with the professor today.
Got to have another MRI early next week, then a possible meeting with the neurosurgeon again the week after. If we don’t have to attend that, the professor and neurosurgeon will discuss our case again and then we will meet with the professor after that.
So basically, we don’t know anything else and I don’t much feel like trying to make this post longer.
Will let you know updates next week.
Next scan is on Thursday. Fingers crossed that we’ll get some idea as to when Seabass will be delivered. We were told any time from our 34 week point, which is 2 weeks on Friday – scary thought!!
We’ve started getting things ready now for his arrival. The pram, nursery furniture, some clothes and some toys have been bought, so it is all starting to feel a bit more real now. The nursery has been painted bright yellow – a nice, happy colour!!!
My sister had her baby last week. She is a little cutie. Her arrival has made us more excited about Seabass arriving, and less apprehensive. Though there are still so many unknowns. We don’t know how long he’ll stay in hospital for, when they’ll perform the surgery, whether he’ll be transferred straight away to the children’s hospital – all questions we will need to ask on Thursday. All questions we will hopefully get answers to on Thursday.
Will keep you all updated. Part of me hopes the little man will be here in a couple of weeks as I’m excited to see him, but it is pretty early to arrive.
Enjoy your bank holiday xx
We came away from today’s hospital appointment feeling more positive – yay!!!
My sister’s lucky bird sh*t hat that she brought with her to the hospital must have come through for Seabass, the bloody horse on the Grand National didn’t (sorry if you put a bet on).
The cyst isn’t growing. Well, it is, but it’s proportionate to the brain’s growth so it’s not actually invading any more of the brain’s space. There is some dilation of the ventricles, but the Professor said he would expect that because of the cyst.
I really like the Professor. He’s as cool as a cucumber and has a slightly “whatever” attitude. That’s not to say he doesn’t care, he’s just really good at what he does and I think he’s probably aware of that. He’s honest, not in an insensitive way, but not in a wrapping you in cotton wool way either. Basically, when he talks you know he’s telling the truth and not hiding anything. I love him, probably a bit too much really (shhhhh, don’t tell the other half). I think I’ll probably kiss his face when we have to part ways because he’s made this whole experience more bearable and we’ve felt safe with him looking after Seabass. Might see if he wants to be his godfather 
There was talk of delivery at 34/35 weeks, which is only 6 weeks away – panic!! Need to get our backsides in gear and actually get Seabass some useful stuff. Nappies, sleep suits, car seat etc. Not just the AC/DC t-shirt and “I love dad” socks we’ve currently got him.
The Professor mentioned that 6 months ago they had delivered a baby with a similar problem and the neurosurgeon that Seabass will see had performed the surgery on this other baby. I asked how that baby was doing and he said he was doing ok so far. Obviously it is a long process to see how the cyst has affected neurological development. As the Professor said, it’s not just an illness that you either have or don’t have. They affect people in different ways. Some have physical disabilities, some have neurological problems but then some end up going to mainstream school and aren’t affected that greatly. It will be an ongoing, long process to measure against different milestones and how Seabass does with achieving/not achieving them. But we’re prepared for that.
So that’s all I have to update you with at the moment. Next appointment is 4 weeks today and hopefully then I’ll have a better idea of when the little man is arriving. Until then, you’ll have to make do with this scan picture that they printed off for us at the hospital (it was actually the Professor, but I feel like I’ve mentioned him a bit too much on this blog post). I’m fully aware that he looks like his face is pressed up against glass, I’m hoping that’s because he was pressed up on my stomach and not that he actually does have a big potato nose.
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
So…….Grand National didn’t go according to plan.
We decided on names for Bump quite a while ago, before we knew what we were having, and for some reason we nicknamed him Seabass before knowing if it was a boy or girl. I think we both subconsciously thought we were having a boy and gave him the nickname associated with our boy choice of names. The nickname has caused a few problems though – no-one in the family now will eat seabass because it feels wrong somehow. A bit like we’d be performing some sort of weird cannibalism.
When I heard there was a ‘Seabass’ running in the Grand National I decided to put a bet on, but then when I learnt he was favourite to win it was like a sign. Is it wrong to think that?
I know logically the health of our baby will not be decided by whether or not a horse wins at the weekend, and I don’t normally believe in superstitious things or anything like that, but I’ll try anything at this point. If Seabass does win not only will I win a few £s but, more importantly, maybe it will be a sign and something good will happen at our hospital appointment next week. Either that or the horse will fall at the first hurdle (fence? I don’t do horseracing), my heart will sink and everyone will hate me for making me put their money on him – but I’m going to try and focus on the good for now.
So, even if you don’t normally bet but believe in signs, have a think about putting a couple of £s on and cheering for Seabass. You never know, it might just work.
(P.S. Just to cover my back, I don’t offer reimbursements if you do lose. It’s purely at your own risk.)
(Picture taken from: http://www.taxitaxi.co.uk)
Just wanted to wish everyone that has been following our blog a Happy Easter. Hope you got lots of chocolate. Thank you for following xxx
Picture from whatsonwalsall.co.uk
Not really had a great deal to write about the situation lately, hence the lack of posts.
I’m definitely struggling to differentiate the good and the more “challenging” things that are going on in our lives at the moment. I can’t seem to focus on anything good, without going back to the bad – it’s always there in the back of my mind. We were looking at prams yesterday and part of me was thinking ‘should we even be buying one yet?’
I’ve started doing another blog to try and write about something that’s not miserable. It purely focuses on nice things and places that we see and go to – kind of a bit of a recommendations blog. I like doing the writing, but I don’t want to be totally depressing all the time. I’m also aware that people probably don’t want to listen to me moaning all the time.
I’m still looking at my website for Bump’s Brain and I’ve written my letter to one of the neurosurgeons to see if she’d do a little Q&A with me.
It’s only 2 and a half weeks until the next scan now. Not really sure what to expect from it. Hopefully to be told the cyst still hasn’t really grown. Had a midwife appointment last week and she said the baby is physically growing well – if anything, he’s probably a bit bigger than average. So my theory is, the bigger he gets and the longer the cyst stays the same sort of size then that has to be good right? We shall see though.
Anyway, that’s all I have to say on the situation at the moment really. Will keep you updated on the website. Hope you all had a good weekend xx
photo from: http://www.45cat.com/record/rs022
Trying to decide what information to put on the website is harder than I thought it would be. A lot of people that write about Arachnoid Cysts say that their doctors just tell them it’s “in their head” (excuse the pun). I don’t want the website to have a negative spin to it, as I don’t think it helps anyone. Also, as we’ve not experienced that negativity in the treatment we’ve been receiving, it’s hard to look at it how they do. I don’t doubt that what they write is true, but I want this website to be somewhere people can go for answers. Not a place where people just complain about their doctors. I want people to feel a bit more positive/hopeful when they have visited. The “medical” information that is written, a lot of it is hard to decipher. I don’t want people to be confused.
I don’t know whether it would be easier to try and get in touch with the Neurosurgeon and see if she would do a short email Q&A session with me. I’m sure she gets bombarded with questions though. I’d also like to try and get in touch with the two people I have mentioned in earlier blogs, whose stories were featured in the Daily Mail, and see if they’d be willing to do a Q&A with me too. Then I’d have some first-hand information to include on the site.
This is a more difficult task than I anticipated, but I’m determined to get it going. If it fails, then it fails – at least I will have tried. It’s also helping me feel better, so for selfish reasons as well I’m glad I’m doing it.
Picture taken from www.warriorfitness.org
