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

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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
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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

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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
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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
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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
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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!

Merry Christmas!

Merry Christmas! I thought you might enjoy this festive shot of an infamous pirate, cuddling Elizabeth. I was hoping to share lots of cute photos of the girls and their cousins but all of the shots we took on the day were very poor (I blame the drink).
We had a wonderful Christmas Day at my mum and dad's, which went downhill from Dr Who onwards as Elizabeth started being sick. Over the next couple of days Elizabeth was followed by everyone else as we'd all caught the very aptly named Winter Vomiting Sickness (with the notable exception of my little niece, Georgie, who must have the constitiution of an ox).
Elizabeth also developed a severe ear infection and has been really bashed about, but has had NO RVI ADMISSIONS! We have had to reorganise a visit from my sister's family which is a great shame.
We are stating to get back on track and today (29th) we are moving towards normal. A and Chloe felt well enough to venture out and have gone to see The Snowman with a live orchestral soundtrack at The Sage. Elizabeth and I have stayed at home and recuperated.
I hope that you all enjoyed a healthy and fun Christmas.
J
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Cuties

Just to prove that we do read the comments, here's a photo of les girls taken yesterday.

J
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Elizabeth meets Dr Sturgiss VIP

Elizabeth and I went to see a very important man today - Steve Sturgiss, who was our consultant in foetal meds and carried out my c-section. We couldn't go in to the unit while Elizabeth had MRSA but we have called in a couple of times since without any luck. I feel very thrilled to have seen him as he treated us wonderfully well during the pregnancy, but I never got to say goodbye (as I was pretty off my face on morphine!).

Dr Sturgiss was grinning from ear to ear when he saw Elizabeth and thought that she looked fantastic. The last time he saw her in the flesh, she was literally minutes old. I took in a sheet of some photos showing Elizabeth's development (nothing too gory) and a short summary of her history, which is going to be shown to anybody expecting a child with a large exomph. I didn't get to see our lovely midwife-stenographer, Donna, but Dr Sturgiss promised that the whole team would be getting to see the shots including that wonderful woman.

Elizabeth has been well for nine and a half weeks now!

J
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Bruce Jaffray Gives His Opinion

Elizabeth and I went to see Mr Jaffray this afternoon. I won't bore you with the details, but the upshot is that if Elizabeth stays out of hospital until January 8th her op will be cancelled/postponed, but if she has any admissions then it will go ahead in mid-January/Feb.

Mr J thinks that it's 50/50 that Elizabeth's problems are caused by reflux, but he has seen children with as few clinical signs as Elizabeth 'cured' by a fundoplication. I think that, ultimately, he feels that the potential for long-term chronic lung damage is too serious to ignore. We trust Mr Jaffray completely, so that's how things will stand.

J (having a drink tonight - yes, indeedy)
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An Official Period of Prevarication

Hi,

We went to see the resp team at the RVI this morning. The great news is that Dr O'Brien thinks he may have been a little hasty regarding the proposed fundoplication and we have now agreed to enter an official period of "If it ain't broke don't fix it".

We are still seeing the surgeon on Thursday to get his views on the operation, but it would be surprising if he's really bullish in light of the what the resp team have now said.

So, this looks like a good result. We just have to hope that Elizabeth, who has now managed a record-breaking seven weeks without a hospital stay, continues to be in good health. She is now the size and weight of an average one year old.

I'll post the results of our meeting with Mr J on Thursday evening.

(A very relieved) J
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It's Grim Oop North

We hope that you enjoy this shot of Newcastle Quayside taken this morning on our way to see a children's classical concert at the Sage with some (new!) friends.

On the topic of Anna's health, Mike McKean - ace respiratory consultant - called and we had a long chat. The upshot is that he is going to meet with the other resp consultant, the gastro consultant and Anna's surgeon about her case. Everything will be reviewed and they will revisit the decision to go for surgery and also look at what can be done regarding the "possible reflux" as far as meds are concerned.

Andy and I are very pleased with this development and we should know by the end of the month what the final decision will be. We will, as always, keep you posted.

Janie
xxx

Ella Bella

Here is a shot of Ella taken on Saturday (the poor child is very neglected on this blog I've noticed!). I know I'm biased, but she does have a most beguiling face.

Anna can walk (as in from room to room rather than a few steps). Hooray!!!!! She is so thrilled you would think she had invented it and often stares at her feet in amazement as they're moving.

Following on from my last post, I mailed the resp team today with some queries about the reflux. I am hoping that as a result we will be able to try some medication/dietary changes regarding the possible reflux rather than going straight for the surgical option.

Janie

Things are going well:

a) I went to an Abba tribute night last night - it was almost a spiritual experience for me. I am thrilled to have finally found a group of girl friends in Hexham who are as childish and into naff music as much as I am. We were the ONLY members of the audience dressed up out of 350 people, but that's rural Northumberland for you...
b) Anna has stayed well for almost four weeks! She caught a cold earlier this week and so we anticipated a trip to the RVI, but so far she is fine.
c) Katie is having a baby in May ( I feel like this entry should be in flashing neon!). We are now moving back to London, so that we can dote on him/her to the required standard (only joking Lucy!).

We have a date in late November for seeing Anna's surgeon, the sainted Mr Bruce Jaffray, to discuss the proposed fundolication, but he must be pretty bullish about it as Anna is already on his list for the procedure. We may be looking at a December op and up to two weeks in hospital, so I am getting my Christmas shopping now!

In the meantime, we have been going through Anna's history to see if anything comes up as another possible cause for her problems. What we can't understand is that if she has reflux (most severe in infants) then why didn't she have these respiratory problems before the age of 11 months? If Mr Jaffrey advises us to say ok to Anna's op then we will go for it, but we currently have real doubts as to whether it will achieve anything. Hopefully, time will prove us wrong.

Janie
xxx

There's No Place Like Home

Hi,

I am thrilled to say that Anna and I came home yesterday afternoon. What a marathon that was. However, we were on lovely Ward 6 with some really nice families and also had a room to ourselves, so it wasn't as grim as it could have been.

Following this latest episode the respiratory team are looking again at Missy's problems and are proposing the following:

In a couple of months, she'll have a fundoplication - basically keyhole surgery to tighten up the loose sphincter in her oesophagus. The new theory (and it is only a theory) is that Anna may have reflux which is making her lung problems worse. The procedure might cause her other problems but it is a reversible.

We'll need to see Mr Jaffrey, super surgeon, about the op as it is his call as to whether it happens. However, as the resp team are now concerned about Anna having long-term lung damage if nothing is done, I think it's likely that he'll go for it! The other worrying possibility is that if she has another couple of hospital stays they may take her into hospital until her op to keep her well and protect her from any more lung damage!!!! To avoid that nightmare scenario we'll be keeping Anna away from bugs as much as is possible - I'm thinking of investing in a little baby mask!

Janie