[tri-med] Re: Hello

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 
> > 
> > 
> 
> 
> 
> ___________________________________________________________ 
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> 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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