Hi to everyone from Suzanne- mum to Jake(RSS) who is 7 today!

[Guest guest]

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

[Guest guest]

Suzanne,

Hi, I am Jodi R. and 's mommy. I am going through the " Hard "

stage you referred to in your post. But, it was really reassurin to

read that Jake has ended up doing so well. I just wanted to tell you

that I hope he had a good birthday, and I am glad everything is going

so well for him....and you, too.

has come so far though, in just a few short months, after

seeing Dr. Harbison, who made 's diagnosis at 17 months old.

He has really gained a good bit of weight and has become much

healthier looking. He was very frail and sickly looking. All of a

sudden, once the wweight started pounding on, he began to be able to

hold his own head, and just became so much stronger. He just turned

2 years old on May 23, and just a couple days before that attempted

to walk on his own. Now, he walks like he has been doing it for

months!

I look forward to even better days with , but I have to tell

you, things are really better now than they were. So, i guess we are

making progress too. Hopefully by the time he is Jake's age, he will

be doing as well aas him!

Take care and thanks for the post,

Jodi R.

> 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

[Guest guest]

WAY TO GO AND HAPPY BIRTHDAY JAKE!!!!

jodie

(nicholas-6 nonrss, christopher-3 rss 24lbs 3oz 34 " periactin, ght

genotropin(on hold until july), ADHD(possible), assmentry(left side

1cm), johnathon-11m nonrss)

> 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

[Guest guest]

Hi Jodi, Thanks for your well wishes for Jakes birthday-he thinks

seven is just the best thing that has happened to him!!

It sounds as if is doing really well. Isn't it such a relief

to finally make a milestone like walking. Jake walked at just on two

as well and for long time struggled to catch-up with all of his

gross motor skills but now is very " average " (yeah)in this area.(This

will never be an area of strength, but I just love that he is just

one of the kids doing all the usual stuff). I hope goes from

strength to strength as well. Growth hormone actually made all the

difference for hiim with physical strength as well as fabuluos catch-

up growth.

When I remember how tough it was for us with Jake at two it's hard

to believe we can be where we are now. It seems so slow when you're

there, but things really do get better. This for me meant that I

could relax and actually enjoy and appreciate Jake a whole lot more,

rather that feeling so burdened and desperate. So, hang in there,

take time for yourself and most importantly laugh lots! best wishes

to you and and your whole family,

Suzanne, jake (7) and Bryn 2(non rss)

Canberra, Australia

> > 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

[Guest guest]

Suzanne,

Yes, I am very proud of how has progressed. I was just

thinking the other day that I didn't ever think that I would see him

doing this well. I have to say, the whole tube feed thing is still

hard, especially now that he is walking because someone always has to

be right behind him, and it is just so nice when he is off for his

two hours. But, I know it has to be like this, but I also worry

about how long it has to be this way.? I guess only time, and

will be able to tell that.

Thanks for your response,

Jodi R.

> > > 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