[tri-med] Re: Fw: subscribe


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> > hi , i am a proud grandmother of a little boy who has recently been
> diagnosed with trisomy 18 mosaic 60%.>>>>>>>
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> Hi Jackie, welcome to this list, but sorry that you need to be here. How old
> is your  grandson?  My daughter Rebecca has trisomy 18 moasaic and is ten
> years old.  please tell us more about your grandson
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> >>>>>>> if there is anyone who can shed some light on how it is going to
> affect him we would be most gratefull.<<<<<<<<<<<
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> no one can tell you how it will all turn out,  it really depends on what the
> extra chromosones do to the organs and body systems:(  many of our kids have
> heart problems, but then some do not, its the same with the other problems
> that are common to t18.  you have come to the right place for support
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> Susan mom to Rebecca trisomy 18 moasaic 10 years old!!!! and Mark LD/ADD age
> 9 wife to Glenn.
> Newcastle Ontario Canada
> hardyboys@xxxxxxxxx
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>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
Hi Sue well where to begin? David (grandson) is just going on 5 years old &his 
problems started before he was born but nothing was done about them.My daughter 
(Georgina) had a bad time carrying him, didn't put weight on, sick all the way 
through was sent for scans which showed up enlarge kidneys &a hole in the 
heart. When he was born there was no follow up on him until Goergina went to 
our own Doctors but before that David couldn't latch on to the breast &was 
cupped fed while in hospital, he came home 5 days after being born.
David cried 23 hours a day, we'd get the doctor out to see him &would say it 
was colic, that was in his first week of life, then he was going between 
hospital &doctor for 4 months &then we got told to take are crying baby home as 
he was just spoilt, but a month later he was having a malrotation of the bowl 
operation.
David put 1 to 2 oz of weight on a month if he was lucky &we were told at least 
he's not losing it. Through Georgina's persistence we got to see a Medical 
doctor at the hospital &David was screaming, the doctor told the nurse to take 
him out &feed him &guess what he wouldn't feed. The doctor asked how long had 
he been like that &we said since birth, he then examined him saw he wasn't the 
weight for a child his age so started putting David on different milks (he was 
5 1/2 months old)they tried the lot, he got a G-tube when he was 11 months &to 
be honest I think thats whats kept him alive. We where under a top doctor or so 
we thought, he done various test, we never ever got the results (yes we did 
ask). We where told he had asthma &were given inhalers, that was a year ago.
We moved house &area so it meant different hospitals (thank god for 
that)&getting Davids files transferred has taken awhile but its done now. The 
new doctor took one look at David &said it wasn't asthma &started getting in 
touch with all the right people regarding getting a diagnosis &when were told 
it was Trisomy18 mosaic we thought they were talking a different laguage as 
they didn't know much about it. David has server lung damage &can't swallow 
properly so he can't eat anything orally at all which was a shock to us as 
we've ben forcing him to eat from birth (which has caused the lung damage). 
They have said he has 60% of the mosaic &he seems to be getting looked after 
now but its hard when you don't know what your up against. I'll end on a happy 
note David started main stream school in September &at the moment is coping 
very well .
Thank you for getting in touch I hope I haven't gone on to long. 
Jackie   
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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