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Updated January 2006
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Ruth writes: "Tilly continues to thrive and be a very content and happy baby. She was
weighed today at her 8 weeks development appointment and she weighed in
at 12lbs 4oz - a gain of 20oz since her last weigh in 12 days ago!! She
is 57cms in length which means she has grown 3cm in the last 3 weeks.
Tim and I were thrilled to bits with this progress.
"Her development check was exceptionally positive and very pleasing and our GP said she was a very alert, active and well adjusted little girl. She is doing everything an 8 week old baby should be doing and she complimented me on the way I am bringing Matilda up and the fact that she is doing so well."
Maggie sent the following captions for the photos - " Look! They've left me her to play!"?
and "2 little girls ready for bed!"
Tilly was weighed last Monday and came in at a very healthy 13lbs 10oz – a weight gain of just under a pound in a fortnight – we are thrilled with her progress – she is thriving – just what the doctor ordered. She takes a good bottle every 3 hours and sleeps through the night – most nights anyway!
We have a busy couple of weeks ahead of us in that Tilly has to have her second set of jabs on Monday and is to see the Respiratory Consultant at Birmingham Childrens on Tuesday. I will let you know the results in due course
.
Tim and I saw the genetic consultant, the results of the investigations they have carried out are quite amazing. As a result of the information available to them, they have established that Tilly is the first person in the Western world to have been born with this condition. They cannot find any reported incidence of anyone else, anywhere in the world, being born with the amount of duplications and reversals that Matilda has. This is quite scary, as I personally would have liked there to have been someone else in the world like her - perhaps we could have found out how they had lived/coped with the condition. However, this makes her famous in the medical world in the years to come and exceptionally special and unique.
"Tilly had her investigations done under a general anaesthetic on 8 December. The staff were fantastic at the Childrens Hospital and they were very good with both Tilly and ourselves and looked after us impeccably.
"The results showed that Tilly does have malrotation where the bowel is sitting in the incorrect position. As a result, she needs surgery to correct this to avoid the bowel twisting and cutting off the blood supply and causing gangrene. This surgery is to take place on Monday next – 10 January 2005."
And from Ruth: "Just a short poem that I have penned for my darling girl - celebrating her first birthday".
FOR TILLY
Over the year, I have watched you grow
And all the time I have loved you so
No longer a baby, not yet a child
Tender and sweet, meek and mild
Your life to start with uncertainty
But your strength always astounding me
My heart would break, but then I would see
Your happy smiling face looking at me
Your trust, your love, your vitality
Are all strengths you get from me
And today as you turn one year old
I smile as though I have found gold
For my darling darling girl
With hair so dark about to curl
I am so proud to say, and sing out loud
That’s my Tilly and I AM SO PROUD
"Today, after church, we went to a local beauty spot at Stourport on Severn, Worcestershire.
We had a fabulous time - David and Sandra had brought some ball games from school and we all, yes Maggie too, were playing games just like we did all those years ago!!!!!
"Tea -time arrived - we set up the picnic and were really enjoying it, when suddenly we had the most terrific thunder storm with really heavy rain. We covered everything up as best we could until it stopped raining. We then tried again but, yes you have guessed, down came the rain again. At this point we decided to abandon the picnic and adjourn to our house.
Hence the photograph of the Longville family was taken indoors instead of outside in the beautiful sunshine."
| GRAVESEND RED CROSS CENTRE |
Ann writes:"Being a member of the Red Cross is not always what some people think. The Northfleet carnival has been running for many years, last year there were 40 entries and over £12,000 was raised for local charities. This year 50 entries and yet again Gravesend Red Cross came away with a trophy. This is not the first occasion when we have received a prize, a couple of years ago we won first prize.
A couple of hour’s hard and effective teamwork has yet again paid off."
| HOW SHE SPENT A SUNDAY IN LONDON |
Ann writes:"Taking 100 children with a very short life expectancy up to London in a convoy of 15 stretched limos, several cars, an ambulance and a coach with the Queens Police outriders was how I spent my Sunday."
Ann writes further:
"The day was arranged by Cherished Memories a local Christian Charity giving special memories to the familes of children not long in this world. If you had read as I did the medical conditions of the children you would have wept.
By special arrangement Tower Bridge was raised and we went up river to Westminster turned round and returned to HMS President for a bite to eat and presentations to the children by the senior officer for the Royal Marines and Royal Naval Reserve".
| ANN'S BELATED BIRTHDAY GIFT |
"My daughter arrived at 4.30 to go with me. Was it worth the wait? The answer was Yes!
"It was not what I had expected, the silence when the burners were off was amazing. We flew towards Sissinghurst and skipped over the roof of the Norman church as we came in to land.
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for "Getting to Know You" PAGE4
