Oxford and surgery

Many of you will have heard the news about the Oxford Surgery unit. Obviously we are not very impressed with this. I have been making my feelings known on the local radio station here You can find me 45 mins in. Do keep listening and also listen to Kim Homewood who says so much more of what I wanted to say – she is on just after the hour mark. Then there is some sort of reply from the commission (at 1h43) – that I have a huge number of issues with.

Firstly he denies the links between the 2 reviews – it would have been impossible for them to not have been influenced by the other review.

Secondly – they are not supposed to have made any decisions yet but they have already said that no possible configuration involves the JR.

They claim that the centre would not be closed but only the surgery service. However how many world class cardiologists will stay at a cardiology centre with no surgery service? We will be left with second best – which is not good enough.

He also talks about surgery being a once off event – but for many children (including Isla) it is not a once off event – these children need continuity of care.

They claim they want to make the network of care stronger, but they don’t say how they are going to do it. With no national NHS computer system, what planet are they on? Isla’s consultant makes a trip once a fortnight to Southampton to meet the surgeons there. What a waste of time. Is this going to be done now by all cardiologists? Travelling up and down the country when they could be treating patients? Obviously it has to be done while there is no surgery at the unit, but is one of the reasons that consultants and surgeons should work at the same unit.

It appears that as parents we have no say at all – despite the Conservative championing choice, and the PM being MP for part of the JR’s catchment.

You can hear other people talking about this on other programs here approx one hour in, and here approx 2 hours in. Kim is especially vitriolic!

The local family support group Young Hearts have released a rather good press release here

There’s a BBC Oxford article here

Update on the girls – Naomi and Isla

We had the following email from Naomi’s Mum this evening. I have no idea what it means but that it is good news – thank you all for praying!

Just to share with you the exciting news that today Naomi’s neutrophil levels went up from 0.0 – 0.2 which is cause for a minor celebration.  However the lumbar puncture and bone marrow test next Tuesday will give us a better clue as to whether or not she is starting to produce the right type of cells or not.  Still lots of platelets and blood needed most days.

Love Alison

As for Isla – still no news on a date I’m afraid. We had a call from Southampton asking us to make an appointment to see the surgeon. We have questioned if this is really necessary, though will of course take the surgeons advice, since it would be a whole day trip for all of us. The Nurse (I think?) I spoke to will confirm with the surgeon and get back to us, hopefully with an idea of a month as well.

I have spent tonight making chutney – very therapeutic!

Thank you for everyone’s support

 

 

Finally

A link to the last couple of months of photo’s has been added – knowing full well that I have another load to upload as yet.

Work is as busy as ever – if not busier.

Isla no longer has chicken pox but does have a big girl high rise bed complete with desk and book case under it like her big brother much to her delight

We went camping – photo’s to follow

We have lots of other plans, but nothing really really exciting to tell you all about!

And sorry I’ve been poor at updating this!

Nathalie

All sorts of updates

Snow – I did get a bit of a snow day in the end. Finished at lunch time on the Friday and got one of the best afternoons ever with my children and Neil – suspect that Neil and I threw more snow balls at each other than anyone else but we had a marvellous time.

Isla – We went to Oxford for the scan on Friday and have been given the all clear for at least a year quite possibly 2 or 3. FANTASTIC!!!! We will still be seeing Dr Archer every 6 months, and we still know that more will need to be done eventually, but not immediately. Interestingly, he suggested that she might eventually need an Aortic Valve replaced, but he hopes that this will be able to be done by catheter when the time comes as that is the way the technology is moving.

School – Callum is on half term, and got a really good mid term report and parents evening report, so really pleased with that too. And Isla has a place at the school as well, so all is looking good.

Friends – we had a lovely weekend with Ian and Janet and the girls. They have now spent one year in Box, though it seems like they have been there forever. It was lovely to see them, and they seem to be doing really well.

I have put the photo’s on the Facebook and will eventually do the linky thingy….

Formula One and other news

So we are selling the F1 team. Good. It’s a huge loss of face for our President, but has to be seen as the right thing at this time. The money is far better spent keeping the factories going than on persuing a dream round and round in circles (both literally and figurtively!) spewing out lots of carbon emissions…. given that I’m not that keen on F1 I guess that that is the expected reaction, but even those collegues of mine who do enjoy it agree that it is a necessary action. And it gives me hope that the management are concentrating on what needs to be done not on just trying to save face. There must be some sensible and good people in them!!

Auntie Marina came to stay yesterday, and has just gone home. We seemed to go through a huge amount of glitter in the course of 36 hours….. most of it spent asleep! We look forward to seeing other aunties as soon as they can make it over.

Nathalie had a concert last night – it was good I think!

Now, what to put in the Christmas letter?!

Birthday party

We had a birthday party this weekend! Shared with Amelie again, in the church hall again, with a bouncy castle again, and forgetting to do pass the parcel again! All the same as last year, and half the children were probably the same as well, if not more! But everyone appeared to have a good time, including Godmother auntie Ellie who came down all the way from Inverness, Auntie Marina and Uncle Chris, who came through from London, and various others as well.  My turn next!

School

Callum has started school, so far successfully forgetting everything that he has done each day. Never mind! He hasn’t wanted a photo taken yet – we will get one at some point and post it!

Amazingly

…. I have got all our photo’s up on to facebook and linked them here. Finally. So sorry it’s taken so long. Last weekend we were at Greenbelt which was fantastic of course. We are thinking of both volunteering for the children’s area next year. If we both do 2 out of 3 sessions we still get some time to go to some talks and the children are guaranteed spaces and we get free tickets to go and it is great fun… what’s not to like really!

Neil’s dad Howard had a minor op on Monday – so far so good the hope was that he might make it home tonight but we will see.

I’m back at work; so is Neil but no students yet, and Callum starts school next week then it’s a birthday party approaching. Mad!

Links and things

Thanks to Yoshi-Sensei for pointing out the photo links had broken – they are now fixed. More to follow when I have a moment – it all seems to be one mad rush to get ready for going to Japan with the normal Summer social events such as weddings, failed camping trips, (ever heard the one about 3 tents, a family of mice, and gale force winds??) family visits and the like to fit in.

Since I last posted we have had Auntie Yuko to stay (which was fun despite the weather and tents) Grandad and Akiko (fond memories of bat and ball and picnics in the forest) choir concerts (next one tomorrow – don’t miss it if you are in the area!) and a trip to the Opera all filling our time.

I passed my VMWare exam last week as well, which was good news, not least for Neil as that was one lot of stress out of the way!

Next weekend we have a day trip to London to meet with various cousins, Aunts and Grandparents at the zoo (which promises to be great, depending on the weather!), and we become proud Godparents of Joel Newman.

then we have a weekend camping trip with our friends Albertine, Mike, Linus and Alex to look forward to, rapidly followed by a Church cell group BBQ, a visit of Uncle Robert (Hartley), and another church BBQ, the children’s Summer music concert (come and here them playing their recorders – ear plugs optional!) and then a much needed holiday.

I should also add that I am a very proud sister of Marina and Yuko who have both been awarded 2:1 degrees this week. Well done girls!! Now if Jenny doesn’t work toooooo hard we’ll make it a full house with all of us the same!!

I will try to get more photo’s up this weekend – honest folks!

Knickers!

Isla is now officially dry (apart from night times but we can manage with that!) and a very big girl. In fact, Isla and Callum have gone to play with a friend today for the first time so Mummy and Daddy have peace on their own!!