Elizabeth the Movie

I made a short vid to celebrate Elizabeth reaching age ten! Jx

Elizabeth's progress

We went to see the respiratory and surgical teams at the RVI today. We don't have to go back for six months now which reflects how thrilled they are with her progress. They are keeping her on her current medication ('preventative' antibiotics, twice daily inhalers etc

Guy Fawkes

Nothing to do with the baby (again), but we wanted to show off the amazing guy which is going to be burnt in Hexham tonight. Here's Chloe admiring it earlier today.

Elizabeth is now nine

Elizabeth is now nine and here she is on her birthday. Healthwise she is still doing well. She suffers with allergies and is never going to be an Olympic runner (87% lung function, so not too bad considering) but she is a thing of wonder :-)

Elizabeth is eight

First day back at school (year 4). Chloe, her big sister, is on the left.

Elizabeth is now eight. She is a very slender little thing and is felled by colds easily, but she is a very happy girl and bright as a button. She still has a scar on her tummy and a slight bump, but she loves it and calls it Christopher! She may have an op when she gets older - we need to go back and see her surgeon when she is eleven.

We all adore her!

Birthday ice cream!

Bruce, Ballet and Bobs

I finally got a photo of Bruce Jaffray, Elizabeth's surgeon, last week. His knowledge and skills undoubtedly saved Elizabeth's life so, as you can imagine, he is very special to us.

I also can't resist uploading these photos of Chloe and Elizabeth to show off a) Chloe's tutu and b) Elizabeth's bob.

J x

Elizabeth is three!

Elizabeth is three - it seems very grown up indeed and we are all thrilled that she has made it to such a great age! She is still keeping us on our toes - we had an admission for a few nights in February and she was ill for much of March and April, but she is getting stronger all of the time. We are still staying pretty much close to home, but planning a holiday in Holland (house swapping our house for my sister's house in The Hague) in August. We have been very lucky with Elizabeth in August in the past and paediatric services in Holland are excellent, so we reckon it's worth a go.

Putting her health aside for a while, Elizabeth is a funny, feisty little ball of energy. She is very sociable and loves a party. Her speech is coming on really well and she makes us laugh a lot (and occasionally cry with frustration!) She has developed a great line in funny dancing and loves to make people laugh. Interestingly, Elizabeth adores medical folk and hospitals in general. In fact, she demands to be taken to see Dr O'Brien (highly-experienced paediatric consultant) if she just grazes her knee. She also asks to go to the RVI when she is feeling sad. Feeling sad is a new emotion for Elizabeth and she does it beautifully with very sweet sighs and lots of leaning her head against walls.

She is an adorable little girl and she and Chloe have developed a lovely relationship despite the age difference. In fact, they have chosen to share a bedroom in our new house. They have already made some new friends since our move and are both enjoying their new town-centre life. I wish we had done it long ago.

J xxx

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