Elizabeth update

A belated Happy New Year to everyone.

We are pleased to announce that Elizabeth went the whole of 2007 without an overnight admission. Yippee!

Will she or won't she?

Elizabeth has been a little poorly again (the week before last), but we managed to keep her out of the RVI this time thanks to the out of hours doctor service (which is very good here I am relieved to report). The steroid tablets really help and she is much stronger than before. We have also been in touch with the dieticians at the RVI as madam has managed to stay the same weight since June despite having grown 6cm over the same period. Nev's one year old weighs more than Elizabeth now!

She is starting playgroup a couple of mornings a week next month and we are hoping that she will cope with that. Obviously, if she starts getting ill more regularly we will whip her out of there and cancel her place .

On a more positive note the photo above is from August and shows Elizabeth with her friend and fellow exomphalos baby Grace, who lives in Edinburgh. They are both little miracles.

J x

PS: Elizabeth has a tan Judith Chalmers would be proud of on that photo. I would like to stress that the antibiotics she is on make her tan very easily - we haven't been basting her under a strong grill...

Elizabeth unwell last week

We had a little visit to the RVI last Friday. Elizabeth had a minor cold but it went to her chest and she became very wheezy. I took her in for the day on the advice of our GP.  Elizabeth was started on her extra-strong antibiotics (she is till on the weekly prophylactic ones) and was much better by Tuesday of this week.

That Friday was definitely one of the worst (and funniest) mornings of my life. It involved Elizabeth hyperventilating, A being away for the week on a course and the discovery that Chloe had nits! Compared to that, any job would be a doddle for me now. Lion tamer? Wing walker? Those are jobs for wimps!

Aside from being a nitty nurse, my other occupation has been plotting (with Mr Jaffrey's support) to get some research done on the surgical treatment of exomphalos. Geeps has seen loss after loss of little ones born with giant exomphalos recently. Only three out of nine babies, including Elizabeth, have survived and that doesn't count the ones whose parents understandably chose not to go ahead with the preganancy because the prognosis was so poor. Well, the good news is that the British Association of Paediatric Surgeons is considering carrying out some research and we are doing everything we can to make that happen.

J
xxx

Summer update

Hi everyone,


I'm sorry that I haven't been updating the blog - it's partly down to the school holidays and partly because there has been mercifully little to report on Elizabeth.

Elizabeth has been doing really well and everyone keeps commenting on how healthy she looks these days (as you can see from the photo). Her new regime of meds really seems to be working and I also think that the damp summer has helped - I may be the only woman in England who was grateful for all that rain.


A and I are starting to relax, finally, and to believe that the worst is over. A is going to try out a couple of sessions at playgroup next month and I am starting to do some work from home (as a market research transcriber if anyone needs one!). We are enjoying a social life together, which is something of a novelty.

We has a real treat last week as we finally got to meet an exomphalos baby other than Elizabeth! Her name is Grace Campbell and she lives in Edinburgh with her lovely parents, Gen and Mike, who are Australian. Grace was treated in the same way as Elizabeth (conservatively) and is almost the same age, so they have an awful lot in common. It was also really great to finally meet Gen, who has been an enormous support to me via Geeps.

Elizabeth is coming on really well developmentally. She's still very small for her age and very slim, but she is chatting away happily and is a very sociable little thing. She can count up to twelve thanks to tutoring from her big sister. Chloe and Elizabeth are very much in love with one another and have lots of fun - long may it continue!

J
xxx

A-listers!

Just to prove that there is no justice in the world... Some friends of ours through Geeps have had their little girl in Great Ormond Street for ten months with not a sniff of glamour in all that time. Alice finally came home and just after she was discharged, her ward was visited by the most glamorous hospital visitors ever -Rupert Everitt, Mike Myers, Cameron Diaz and the utterly gorgeous Antonio Banderas!

Mind you, you don't even get a sniff of Ant and Dec at the RVI...

J
xxx

Italia

ITALIA 2007

We got to Italy and had a lovely time with a couple of provisos. We had to take Anna to hospital in Piombino (lovely views of Elba from A&E!) and also we had very severe wet weather for 50% of the holiday. This holiday was like the little girl who had a little curl - when it was good it was very, very good but when it was bad it was horrid!

Here are some shots of the holiday. The girls had a great time rain or shine.

Janie
xxx

The bay after the storms...

Anna and Andy on the beach

A very wet Pisa - doing the tourist thing!

Sun! Sun! Sun! On the campsite.

Chloe and Elizabeth enjoying the fantastic kids' pool

The bay in sunny weather

Elizabeth is two

Elizabeth is two - something which, for obvious reasons, is an extra special celebration for us. We held a lovely little party this morning and I hope you enjoy the photos. The group shot features Chloe, Elizabeth, cousins Ruby and Ted, and Evie (daughter of our friends Karen and Sean). The shot should also feature Elizabeth's only friend, Eve's sister Ruby, but she ran off before we could capture her image for prosperity!

Elizabeth received lots of lovely cards and presents. Thanks to everyone who sent them. Proper 'thank yous' will go out this week.

J
xxx

Good news!

Hi,

I'm pleased to say that Elizabeth was discharged late this afternoon! J had to wait in the room all day as Dr O'Brien was called away on an emergency and therefore couldn't assess and discharge Elizabeth until then. There was a lovely reunion when we got home - Elizabeth walked in and cuddled Chloe with a huge grin on her face! She was delighted to see her lovely Grandma and Grandpa too - who have been an enormous help here over the last few days.

Looking forward, Dr O'Brien did say that he'd be very happy for us to go ahead with our Italian holiday at the end of this month - hurray! - and we're still planning to visit our lovely friends Susie & Heath near Worcester this weekend. Plus, we hope, the Brucie bonus of meeting Elizabeth's fiance Seth and his parents who live in that neck of the woods. We've conversed with Claire & Fran on the GEEPS forum for a long time; they've been stalwart Elizabeth supporters and regular posters on this blog!

Off to bed now - happy!

Axxx

Looking better

Hi,

Elizabeth's still in the RVI... Monday night she needed oxygen and a nebuliser, much as expected; consequently J had a dreadful night as the alarm on the sats machine kept beeping! However last night was much better and Elizabeth didn't need oxygen at all. So fingers crossed, she might be sprung from hospital today... I'll keep you posted!

Luckily my Mum and Dad arrived yesterday en route back up to Scotland, and are able to stay on for a few days. That's a massive help as they're able to do the school runs for Chloe and generally keep our spirits up!

Axxx

One step back

Hello all,

Well, Elizabeth's made such wonderful progress - I think the last hospitalisation was in September or October last year - we'd kind of hoped that that might be it... whereas last year almost inevitably a cold would lead to a chest infection, since then she's had plenty of colds and fought them off. With the help of the preventative medication regime she's been on, of course!

Sad to report therefore that the little tinker went back into the RVI at 6 this morning. This time her latest cold has gone to her chest. So far she hasn't needed oxygen, but she's been borderline and may do tonight. She's very cheerful though and still charming everyone around - including Mr Jaffray, who I saw while J popped out at lunchtime. Bruce said that given Elizabeth's overall trend is up, and it's been so long since her last admission, he's revising his previous opinion that the next admission would mean doing the fundoplication procedure.

The pity is that Elizabeth saw the respiratory specialists and Mr Jaffray just last Monday, and wowed them with how well she's doing!

In other news, I had a fabulous time down in Norfolk at a joint birthday do thrown by and for my sister Liz and her partner Harry. We had an impromptu (red wine fuelled!) jam session on the Friday night with various members of the extended family joining in; and although I don't think the record companies will be breaking down the doors to get to us, we had a great time and it served as a reminder of what a lovely family I have! The party the next night was excellent, with lots of family and friends there to celebrate with Liz and Harry in the setting of a fab ex-cinema, now a social club.

Finally, it's been a while so here are some pix.

Here's Elizabeth, on Thursday just gone, difficult to photograph these days as she never stays still! Also as you'll see she's abandoned the tutu'n'wellies look in favour of the bohemian look: dinner-splatted cardie and apparently never-brushed hair...


...and here's our beautiful Chloe in her 'schooliform'. How grown up she looks now!

More soon -

Love A xxx

New shots of Elizabeth

It's a lovely day here, so Elizabeth and I have been out in the garden. I thought that her fans might like to see how well she's looking in her tutu and wellies.

J

xxx

Latest Elizabeth update

Elizabeth and I went to the General hospital in Newcastle on Monday. This was an adventure as we have never darkened the doors of the General before and it took me 25 minutes to find a place to park. However, despite the best efforts of the hospital planners, we made it to the clinic on time and in one piece to be told that Elizabeth almost certainly has an allergy to egg. Bloods were taken to be tested and and we are to avoid anything eggy for now - I will see a dietician to be trained in this.

She does NOT have a milk protein intolerance. Now a normal mother's reaction would be "Yippee" but I am actually a little disappointed. For the sake of our sanity it would have been great to have a solution as to why Elizabeth got so seriously ill so often last year and then we would know how to stop it happening ever again. However, Elizabeth has been well for quite some time with the help of the antibiotics she takes every couple of days, so we are slowly learning to stop worrying despite the ongoing mystery...

J
xxx

Gill is 70!

My mum was 70 this Sunday. We held a lovely little party, which is all mum wanted bacause of Molly's recent death.

The first two photos show the blazing inferno that was mum's birthday cake (she made the cake and put ONE CANDLE on it but we added another sixty nine secretly). The third shot features mum wearing the hi tech headset that my sister, Sue, bought mum to enable her to chat on the phone without neglecting her household chores!

Janie

xxx

It's been a while

Hi all,

Sorry we've been so slack!

Happy to report that Elizabeth's been pretty well since her allergy/intolerance/whatever it was incident last month. She's had a couple of nasty colds but has fought them off - that's really encouraging as last year it was a case of "she's got a cold - better pack a bag for hospital because it's only a matter of time..."

The only thing is that Elizabeth's not put any weight on or grown recently - in fact she's actually lost a bit of weight. Hardy surprising because she never stops !! We're going to have to up te calorific intake again. Luckily she seems to share my love of chocolate :-)

We've had a lovely visit from my mum while my dad is in Jamaica... the girls had a lovely time with their grandma:

Elizabeth's going into the Newcastle General Hospital for her allerg tests on Monday so we'll keep you posted with the results.

Ax

A New Theory!

I took Elizabeth to see the resp team today. I won't bore you with all the details, but they have definetely backed off on the fundo and we are now exploring the possibility that Elizabeth may have a cow protein intolerance which caused her resp problems. Chris O'Brien is writing to the allergy consultant so that we can be seen ASAP.

J
xxx

Eggy

We had a visit to the RVI today, but not for the usual reason!

We had friends to dinner last night and I bought three very yummy 'Gu' chocolate mousses for dessert - one for Andy, one for Al and one for Vicky. Saint J ohad fruit salad. Owing to the incredible willpower of Vicky, one mousse was left over and this morning I decided to give it to Elizabeth just before we left for Sunday lunch at my mum's. WHAT A HUGE MISTAKE! Elizabeth said "Yum" and then things went raidly downhill with coughing...swelling...dreadful rash...vomiting...dash to Hexham hospital...Piriton...less rash....less swelling...ambulance to RVI.

We were really taken to the RVI because of Elizabeth's complicated history rather than her level of illness and we were finally sent home at tea time. Elizabeth and Chloe had enjoyed a lovely play in the Ward 5 playroom and Chloe read much of her book on Florence Nightingale (this term's big homework topic). Elizabeth is now to be referred to the RVI alergies consultant. It looks like an egg allergy, but they want to check for any others as she is still a vulnerable little thing.

This was not the lovely, quiet Sunday we were looking forward to (particularly A who overdid the single malt last night, bless him!), but at least we know about the egg allergy now and it's great that the consultant will check for any other problems.

J
xxx

Hooray

Elizabeth and I saw the sainted Bruce Jaffray today and Elizabeth's op has been postponed for now.

Mr J said slightly ominous things such as, "It wouldn't take much to persuade me to do it" and "I don't think she's out of the woods yet", but for now the cloud has been lifted!

We are going to have a quiet couple of months to keep Elizabeth away from germs and then hopefully we'll be able to have some fun way from home.

J
xxx

Chloe is seven!

Chloe is seven - how amazing! here she is with her (much-loved) cousin Hugo who was over from Holland. His sister Georgie can just be seen to the left.

After our challenging Christmas to New Year period, we had a lovely few days featuring visits from my sister's family and then A's parents.

Elizabeth's birthday party took place on changeover day. The kids made their own birthday tea which they loved and I would highly recommend this to other party givers!

J
x

Happy New Year!

Happy New Year! We had a great time seeing Nev and Mel in the afternoon and going to Chris and Steve's for the evening. Here are some highlights!