[tri-med] Re: Costello syndrome

Yes I also checked out the web site, great pictures.  I am also hoping that 
next year we will go to the conference.
I talked to the mom yesterday for over an hour.  She sounds like a great mom 
and her husband sounds awesome as well.  They are doing well, but the longer I 
talked with her and she became more relaxed with me she said it is hard when 
your friends are all starting families and this is our first baby and nothing 
seems "normal"  Man my heart went out to her, no support group thank goodness 
she has a wonderful family.  I told her to call me and we could set up 
different times starting in the fall that I could come over to her house and 
watch Anthony while she did her running around or just did some things for HER. 
 I also told her that she should considering joining us...her doctor told her 
that we have different issues so we could not help her...I don't agree.
Well thanks again...
Tracy mom to Cody (Trisomy 9)

-------------- Original message -------------- 

> You're welcome! They have pics on their homepage, and it reminded me of 
> conference. I wish we could go this year, it was such a great experience. 
> Oh well, maybe next year! 
> 
> Jennifer, mom to Arwen, 7; Elanor (t18), 5; caregiver to Joe (cerebral palsy 
> & spastic displaysia), 26 & Eric (cerebral palsy & seizure disorder), 19; 
> and wife to Andrew; Boise, Idaho 
> ----- Original Message ----- 
> From: 
> To: 
> Sent: Wednesday, June 29, 2005 10:26 AM 
> Subject: [tri-med] Re: Costello syndrome 
> 
> 
> > Thank you so much Jennifer for the website. I sent it off to my friend 
> > who is in contact with them. Boy, you girls and guys are good at 
> > helping...and FAST too. I hope they find a group like we all have 
> > here...fun,loving,caring and very supportive of each other. Thanks I know 
> > I don't write much but I read every email and have learned alot from 
> > everyone. The knowledge that is shared on this support group is awesome. 
> > I have only had the honor of meeting four families but feel like I know 
> > most of you. You are all awesome and I talk about all of you all the time 
> > to my family and friends. Thanks for everything..... 
> > Tracy mom to Cody (Trisomy 9) 
> > -------------- Original message -------------- 
> > 
> >> I found a website for the Costello Syndrome support group. It is 
> >> http://www.costellokids.co.uk/ . It looks like there is quite a bit of 
> >> info 
> >> and contacts for parents. I hope they can find the help they need. 
> >> 
> >> Jennifer, mom to Arwen, 7; Elanor (t18), 5; caregiver to Joe (cerebral 
> >> palsy 
> >> & spastic displaysia), 26 & Eric (cerebral palsy & seizure disorder), 19; 
> >> and wife to Andrew; Boise, Idaho 
> >> 
> >> ----- Original Message ----- 
> >> From: 
> >> To: "Trisomy" 
> >> Sent: Wednesday, June 29, 2005 6:28 AM 
> >> Subject: (no subject) 
> >> 
> >> 
> >> > Good morning has anyone ever heard of "Costello Syndrome"? 
> >> > Cody's P.P.I. teacher has a friend that has a grandson who was born two 
> >> > months premature and they are saying he has this syndrome. They have 
> >> > tried to find info on the net but are having a hard time finding any 
> >> > information. Thank you in advance for any input from all of you 
> >> > wonderful 
> >> > and knowledgeable parents. 
> >> > Tracy mom to Cody (Trisomy 9) 
> >> > Building ___ooOOoo__ Rainbows 
> >> > www.trisomyonline.org 
> >> > Families Helping Families On-line 
> >> > 
> >> > 
> >> 
> >> 
> >> Building ___ooOOoo__ Rainbows 
> >> www.trisomyonline.org 
> >> Families Helping Families On-line 
> >> 
> > 
> > Building ___ooOOoo__ Rainbows 
> > www.trisomyonline.org 
> > Families Helping Families On-line 
> > 
> > 
> 
> 
> 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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