Update and cute photos

Elizabeth is motoring away and has reached a a positively chubby 10IBs 7oz! We have been busy, busy, busy with ChlElizabethoe on her school holidays. She enjoyed a fabulous week in Glamis with A's parents last week and was spoilt rotten. She has also been transformed into a ballet buff - other children may demand Power Rangers but our eldest now wants the video of 'La Fille Mal Gardee' on!

I hope that you enjoy the photos above of a lovely smiley Elizabeth and a shot of her without any tubes. She pulled her NG tube out again last week and I took the opportunity to change her oxygen cannula and grab this photo. I hardly recognised her!

We are fed up with the oxygen and the NG tube.  is suffering from really dreadful colic as the result of the tube feeds at night, but unfortunately we can't stop them yet. Poor wee scrap.

J
xxx

PS: It was lovely to hear from some new 'commentors' such as the Silver Surfer Scarratts, but sorry to hear that the Greenwoods managed to emigrate to Oz without us getting a nice cheap phone call in to Brighton first! Good luck, guys.

Hospital visit

Hi,

Elizabeth had an outpatients appointment at the RVI yesterday. All good news. Dr McKeen (the 'chest' man) was absolutely amazed by Elizabeth's progress in terms of growth and lung development (so amazed he got a colleague in to have a gander as well!). He is happy that she would now be able to cope with an operation and has given Mr Jaffrey his go-ahead. We had hoped to get the all clear to start weaning AElizabeth off the oxygen, but the decision was made to allow Elizabeth to continue to put weight on for another month (our next appointment is Sept 12th).

Mr Jaffrey was thrilled with how the exomph is coming along. He will see Elizabeth on Sept 12th as well, and will then take a view of a date for the operation. Although he reckons Elizabeth will probably be ready for the op in September he doesn't want to rush into it; he said that he'd like to see Elizabeth off the oxygen for a while so that she doesn't end up on a ventilator for a week after the op. On that basis we reckon November looks likely...

So, overall, great news and Elizabeth continues to amaze us all (healthcare professionals included) with her determination to beat the odds!

A&J x

Visitors!

We had a lovely visit from old friends Ally, Howie and their two children Charlotte and Sam. There's only a few months between Charlotte and Chloe and they get on brilliantly (as do Sam and Chloe),

Many thanks to Howie & Ally for helping out so much and looking after us!

It was also lovely to see A's sister Liz and daughter Phoebe for a flying visit on Saturday.

A&J x

Smily baby

A very welcome development is that Elizabeth's learnt to really smile - responding very well to funny faces (just as well given her mum & dad...!)

No news is good news!

We've had a good but very busy week (I curse these summer holidays!), so once again it's been difficult to update the Blog. Elizabeth put on another 6oz which was amazing and she's due another weigh in this Wednesday. She is now going up in line with the 2nd centile. She is looking very well and her exomph seems to be shrinking before our very eyes.

We had Charon and her lovely baby, Grace, to stay last week. Charon was a great help. Gone are the days when we would salsa until dawn - it was lights out at 9.30 for us!

We still have the community nurses in every morning to help me to dress the bump, but are able to go out and about other than that. A was away this weekend at Howie's 40th celeberations in London, so my mum came to stay and we went to the Life Centre in Newcastle. Because of Elizabeth's condition we can claim free entry to a lot of the major attractions in the North East, so Chloe will enjoy some great days out this summer. Yesterday's highlight was a rocket making workshop!

Must sign off - I had a very busy night with Elizabeth last night and I am losing the will to live...

J
xxx