Re: Finlay update

[Guest guest]

Congratulations . I suppose it's strange to congratulate someone on having

a syndrome,

but once you have come to accept that there is a problem, it is so much of a

relief to have

a name, a place to belong and a wonderful doctor who will help in any way

possible. It

allows you to finally stop those middle of the night horror flashes, or worse,

every

magazine you pick up seems to have some kind of heart rending story of a child

with some

horrible disease and our minds start to think " what if?? " .

So again, although we'd much rather congratulate the child who magically starts

to grow

again, I am pleased that you have finally found peace in your life. Now you can

do the real

battling with a firm diagnosis and definite, tried and true strategies!! Good

luck

Debby

juliaforsyth@... wrote:

> Hi again,

> just realised I havn't updated you all on what has been going on with

> Finlay recently.

> We have been corresponding with Dr H and she has agreed that she

> thinks Finlay does have RSS. This has been a big relief as I now

> know I have not been imagining things!!! Its also been a relief to

> know that there is a reason for his failure to grow - I'm sure some

> of the doctors we saw wondered if it was because of something we were

> or weren't doing. Anyway it is the beginning of a long road for us

> as I know that the doctors here are not going to accept a diagnosis

> made over the internet!! However the fact that we have consulted

> with Dr H gives me the confidence to stand by my convictions and

> ensure that finlay gets the best treatment available.

> this forum has been such a fantastic source of knowledge, advice and

> support. After spending the last 17mths feeling quite alone and

> unique in the whole parenting journey -it has been a revelation to

> meet parents facing the same issues. I want to thank you all again

> for your support and your openness.

>

> (Finlay 17mths 7.5kgs 70.5cm - I know that will mean nothing to most

> of you but I can't convert to imperial....)

>

>

>

>

[Guest guest]

,

There are 2.2 pounds/kilo and 2.54 cm/inch. That may help you convert

Finlay's measurements for us Americans who may not have learned the metric

system.

Jodi

[Guest guest]

- that is great! Although technically an RSS diagnosis may not change

treatment protocol for an IUGR/SGA child, it certainly does have an emotional

impact for us, doesn't it!!!

S.

RSS-Support wrote:

>

Hi again,

>

just realised I havn't updated you all on what has been going on with

>

Finlay recently.

>

We have been corresponding with Dr H and she has agreed that she

>

thinks Finlay does have RSS.  This has been a big relief as I now

>

know I have not been imagining things!!!  Its also been a relief to

>

know that there is a reason for his failure to grow - I'm sure some

>

of the doctors we saw wondered if it was because of something we were

>

or weren't doing.  Anyway it is the beginning of a long road for us

>

as I know that the doctors here are not going to accept a diagnosis

>

made over the internet!!  However the fact that we have consulted

>

with Dr H gives me the confidence to stand by my convictions and

>

ensure that finlay gets the best treatment available.

>

this forum has been such a fantastic source of knowledge, advice and

>

support. After spending the last 17mths feeling quite alone and

>

unique in the whole parenting journey -it has been a revelation to

>

meet parents facing the same issues.  I want to thank you all again

>

for your support and your openness.

>

>

(Finlay 17mths 7.5kgs 70.5cm - I know that will mean nothing to most

>

of you but I can't convert to imperial....)

>

>

>

>