Hello,
Just another quick late night something to be going on with. It feels like we have had another whirl of appointments in the last little while. Mainly to do with us rather than Rosa which is definitely preferable. We went to Exeter to see a Mr.West who is a fertility consultant. We found our way onto his list of things to do via a referral from Dr.Moody who has been brilliant chasing up that side of things for us. After we had seen the gynaecologist in Barnstaple and he had told us about the CVS testing we wanted to find out more as he didn't know much about it and thought it could be done from 6 weeks but everything we read on the internet when we came home said much later more like 11 weeks. When we saw him it was a bit of a flattener as he talked quite a bit about odds and how ours aren't great, obviously we know this but hearing it in black and white isn't much fun. We talked through our options with him again and basically we feel that the CVS testing is the only acceptable one. Even if we were to go for embryo selection (they don't call it that, can't remember what they do call it) our chances of it being successful are only about 20% and also it is an emotional ride I don't think we are fit for at the moment. The other options are just cross fingers and hope, obviously not really an option or wait until 16 weeks and have an amnio which takes weeks to come back as they have to grow a culture before they can test. So when presented in that way if we want to do it there does only seem one option we just have to take a deep breath and be prepared to deal with the consequences. We do want it though, and it is so vital life doesn't stop here we need to be brave and keep going. It probably won't happen for ages if it does at all as it took ages last time........
The other interesting appointment we had recently was with a genetic nurse from Exeter called Gillian. She was really nice and much more positive and well informed than Mr.West. She said the CVS test is a yes or no answer there is no doubt about the result. This is a real relief as Mr.West had led us to believe one in 50 was wrong. With our odds as they are we don't need any more doubt. She also said that they don't do the test until 11 wks because its very dangerous to the embryo earlier on, but the results are quick. We also talked about other members of our families getting tested and spreading the word to far flung family members if need be, we need to get our mums tested to see which side the duff gene has come from. We saw her instead of Dr.Turnpenny who we were not going to be able to see until December, once again thanks to Dr.Moody and his persistent secretaries, it seems Gillian has taken us under her wing a bit and we have slightly skirted round a waiting list. Thank you Dr.Moody!
There has also been some news about counselling at last. We met a lovely lady called Jane Ley She is the community nurse for children with special needs (or something like that) she came round for a home visit and is going to come regularly, about every month or 6 wks to get to know us all and generally be another helpful person. Her field is the medical side of things which will be useful later but at the moment she is on the case for counselling for us and is quite confidant. She has helped a couple of families in the past and has already been on the phone to Dr.Moody who has written a referral so we'll see, It would help us a lot I think, I hope that it can be an ongoing thing as this is going to be a long old journey we are on.
So not up to date with our lives but kind of nearly with our appointments! We had another one with Dr.Sharples but nothing much new, medication immanent but waiting on Dr.Arend so not holding our breaths.
Rosa is a delight at present. She struggles with heat and sunshine (it has been her kind of summer!) so she wasn't on top social form over the weekend but we all had a wonderful time celebrating Carolyn and Martins wedding and enjoying Cornwall at its best. She returned home refreshed and refueled by her party weekend, a very happy camper and well up for busy week of therapy's! We are off again on Friday to visit Auntie Lou on St.Mary's Isles of Scilly via uncle Charlie on the way there and Granny on the way back, just me and Rosa, very exciting but we are going to miss G lots, we've never been on such a solo adventure!
Its late again, more soon
xxx