[tri-med] Re: Hello

HI Callie,

I don't worry less, but as I am realising I think its
a parents perogative to worry constantly about their
kids and also feel guilty about not doing enough. But 
I do feel more moments of things being a little
easier, but then I also still get moments of feeling
completely lost. I don't think a parent can win
really. I watch my friends with their kids (none of
whom have any diagnosed genetic condition) and one
friend is worrying herself sick about her 7yr olds
eating habits, he's so picky about his food that he
will only eat chips, sausage and tomato ketchup and I
mean nothing else, no veg, no fruit  My other friend
has a child from hell and can do nothing with him. So
I suppose as parents we all have levels of worry, but
the way I see my son is that he is even more special
and amazing, he is such a determined little boy.
Any time you need a chat send us an email.

Katy. son t8m.
--- mcmuni@xxxxxxxxxxxxx wrote:

> Hi Katy.  Thanks for sharing about your son.  I'm
> glad he is doing well.  Sounds like the first year
> was a rough one for you though!  So, does it get
> easier as you go along?  Do you worry less about him
> now?  It is amazing how much of a better person I am
> after knowing Maiya for only 6 months!  I can only
> imagine what the future holds for us.
> It is really nice to be a part of this group!  
> 
> Callie
> 
> 
> -------------- Original message from Katy Roberts
> <basil1_2000@xxxxxxxxxxx>: -------------- 
> 
> 
> > Hi Callie, 
> > 
> > We live in the UK and when my son was diagnosed at
> 2 
> > weeks old they told us t8m was so rare that there
> were 
> > only 100 cases world wide. The only info they had
> was 
> > some old horrendous medical book which they 
> > photocopied and gave to us. Even the genetisist
> said 
> > she had only ever heard of one other in the UK and
> 
> > that there was very little info. 
> > Because my son was desperatley ill when born
> because 
> > being 3 months prem all the doctors would do is
> say 
> > well maybe its due to a t8m complication, they
> came up 
> > with all sorts of things - like maybe his rib cage
> was 
> > not growing. I ended up in contact with endless 
> > doctors around the world. As it worked out a
> simple 
> > barium swallow showed that my son had a
> malrotation of 
> > his gut and it was corrected and he has been great
> 
> > ever since. 
> > I guess what I am saying is go with your instinct
> and 
> > if you find a good doctor along the way then stick
> 
> > with them. 
> > This site you have found has been a real life
> saver 
> > for me and I have learnt so much. 
> > Another good organisation is called UNIQUE, it is
> all 
> > about rare chromosome syndromes and has alot of 
> > relevent info about t8m and other families as 
> > contacts. 
> > 
> > Katy. son t8m. age 3. 
> > --- mcmuni@xxxxxxxxxxxxx wrote: 
> > 
> > > Thank all for sharing info on cellulitis. We
> were 
> > > very lucky to catch it early. She is on
> antibiotics 
> > > for a week. Hopefully that will clear it up
> fast! 
> > > We go to her pediatrician tomorrow for her 6
> month 
> > > check up, so that will provide us a chance to
> have 
> > > it checked again. 
> > > We live in Sebastian, FL. It is on the east
> coast 
> > > about an hour south of the orlando - cape
> canaveral 
> > > area. Does anyone else live in florida? 
> > > 
> > > This is something you all have probably already 
> > > gotten used to, but I'm astounded by the fact
> that 
> > > the local geneticists don't even know much about
> 
> > > T8M. I don't think they've ever had a T8M
> patient 
> > > before. Is that common in other states / areas
> too? 
> > > Has anyone found a doctor with lots of
> experience 
> > > with trisomy? If so, is it worth traveling to
> see 
> > > them occasionally? 
> > > 
> > > Callie 
> > > Mom to Cade 5 and Maiya 6months T8M 
> > > 
> > > Building ___ooOOoo__ Rainbows 
> > > www.trisomyonline.org 
> > > Families Helping Families On-line 
> > > 
> > > 
> > 
> > 
> > 
> >
>
___________________________________________________________
> 
> > Want ideas for reducing your carbon footprint?
> Visit Yahoo! For Good 
> >
>
http://uk.promotions.yahoo.com/forgood/environment.html
> 
> > Building ___ooOOoo__ Rainbows 
> > www.trisomyonline.org 
> > Families Helping Families On-line 
> > 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
> 



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