Re: Hi to everyone from Suzanne- mum to Jake(RSS) who is 7 today![CHAT}

June 18, 2004

Hi Suzanne

Do you remember us.Jo and who have Christian[amoungst others]You came

to our house a few times in the uk.Its great to hear that Jake is doing so

well.Does he still have his spikey hair.I just can't believe he is

7[although Christian was 8 in april so he would be]Christian has also done

well and is just above the 25 centile for weight and height.It doesn't seem

possible!!!!Anyway must go.I would love to see a photo of Jake as I still

have the photo of Jake,Christian,Sophie and Imogen sitting on my sofa

ope tp hear from you

Jo

Hi to everyone from Suzanne- mum to Jake(RSS) who is

7 today!

> Hello everyone, Just thought I'd make a nostalgic visit to make

> contact with some other parents of RSS children. Today is our son

> Jake's seventh birthday. Every year that passes we marvel at how

> fabuluous he is and how grateful we are that each year it has become

> easier for us all. The first few years were so hard, full of tears

> and struggle. We are a long way from that point now.

>

> Our story will be familiar to many of you. Born premi,iugr weighing

> 605 grams and basically a bag of bones! Almost a year later we

> received his RSS diagnosis, found the growth foundation (UK) and the

> magic foundation and lots of answers.

> At around two Jake started GH in the UK and shortly after had a PEG

> fitted (instead of an NG tube). He has'nt looked back and has gone

> from being well below the 2nd centile to above the 25th at the

> present. He is very slight in build but is attending the local

> primary school and doing really well. His appetite has recently

> improved markedly, but is basically still 95% tube fed. Jake has a

> great sense of humour and is a loveable, sociable little boy.

>

> I hope that those attending the convention have a wonderful time. The

> conventions in the UK were a lifeline for us when Jake was a baby.

> Good luck to you all.

> Suzanne

>

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