Hospital update

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.

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One thought on “Hospital update

  1. This is the lady from the “Epidermoid Brain Tumor Society” Our international organization supports the congenital epidermoid tumor along with the dermoid, and the arachnoid. Again I would like to extend an invitation to you to join us at our Facebook http://www.facebook.com/#!/groups/epidermoidbraintumorsociety/?fref=ts. We also maintain a webpage, http://epidermoidbraintumorsociety.org/ , especially for educational purposes We are international and have many members from the UK and other countries. You would gain much knowledge and peace of mind by knowing our members. Please let us support you through this trying time. Sincerely, Joyce Powell, Adm. Epidermoid Brain Tumor Society

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