Tuesday, February 27, 2007

Breast Feeding

As some of you avid readers may know, as I don’t have any adrenal glands I have to take steroids three times a day as replacement therapy (most of you produce it quite naturally). I, we were concerned that I may not be able to breast feed but hooray I’m allowed. I reserve the right to change my mind about being pleased when I give it a go and I have to put up with leaking boobs and feeling like a food factory.
Prof C also made it clear that he is being very cautious when insisting on a C-section for the birth but he doesn’t want any of my hemangeoblastomas bleeding under the pressure of pushing because the one woman he knew who that did happen to died. She had a much worse set of them than me and had had all sorts done to them like radiotherapy but I’m with him on the better be safe than sorry side of life.
So I’m enjoying being pregnant right now, I love the attention, at 19 weeks my bump is starting to look like a baby bump and not just a ‘who ate all the pies’ bump. I still want to tell everyone I meet but I’m not being that mad.
We saw the geneticist too and as testing/screening for tumours would start at 5years he suggested we wait till then to find out the child’s VHL status. I said I’d rather know as soon as possible because if I know it can be a natural part of who he/she is and if not wonderful. I’d just worry for 5 years if I didn’t know and my brilliant, better than I ever expected to get, partner agrees.
Something else that struck me was prof C’s comment that if our baby did have VHL he expected we would be devastated, you know I don’t think I will be, sad, yes, but I feel like - who better to be around if they do. My parents have never made me feel devastated about it, it’s part of me and it has made me who I am. And I may be repeating myself but what ever happens this child will have to cope with VHL because it’s mum and granddad will have it.
Really feeling upbeat today, I’ve got a smile on my face and it is there quite naturally.
So here’s hoping the next half of the pregnancy goes as well and then the rest of the little bundles life too.

Sunday, February 25, 2007

e-mail about dad

hi all

just to let you know the latest, dad had an appointment with prof C tonight re balance and general wobbliness. The good news is prof C says that it should be something that can be solved. The two most likely reasons are either a tumour in the cerebellum or a problem with medication. To find out he is going to have a MIR scan and has had some blood taken. We are all pleased that he didn't say 'well there you go, bad luck old chap looks like you'll need two sticks or a wheelchair.' or words to that effect. I’ll keep you all posted of course. Thanks for positive thoughts prayers etc.
love

Thursday, February 08, 2007

wobbly father

My parents came this weekend, it was great to see them. Each time my dad seems more wobbly. The radiotherapy took its toll and there isn't anything anyone can do. We talked about him getting a cane. My sister gets sad, she lives about 10mins from them and she gets to spend a lot more time with them. She said it makes her so sad when she is out with him and strangers assume he is drunk because of the way he weaves around.
As a family we laugh a bit at it now, dad does, making 'oops' and 'whoa, ooh' sounds when he's toppling towards the wall, door, floor, dog, grandchild...
At a New Years meal my mum screamed his name as he stumbled backwards from his chair.
'That'll help' I laughed as I saw my mum realise how angry she was getting at him for something he has no control over. It must be so much harder for her. I know they talk about when he may end up in a wheelchair and how the house would have to change. I don't want to think about that.

I'm not married but I want to be and my partner and I will one day but it occurred to me that I want my dad to walk me down the aisle, not me drag him down trying to avoid small children that he may go splat on. But then these are the moments that make the day, the funny stories you remember. I just pray that please god by the time we get round to it he is still with us. I'm so grateful that if all goes well he will meet his grandchild.

I reckon he's got a good 15 years in him yet. I hope and pray I'm right.