#6
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Thank you everybody for replying. I am sorry I had forgotten that I had posted here, (head in the clouds) so much going on.

I feel a little bit clearer about things now, and I have managed to find a lady who has the same condition who has reassured me.

Our next hurdle is my sons 4 hour operation in September which I am dreading, but like you say need to take one day at a time.

Thank you again and it is so very kind of you to reply even though your children's conditions are not the same. I hope you are all well and that your children are doing ok.

Take care.

Ginny
#7
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Hi Ginny, i have a daughter Lucie who is 8 years old. When she was born it was first thought that she had pierre roban but they changed there minds and said it was goldenhar syndrome. I'm guessing we'll both be going through pretty much the same stuff, so if you ever want to chat i'm more than happy!

I'll tell you a little bit about Lucie, she has no lower right jaw bone and need a rib graft to give her a jaw. She has butterfly vertabre at the top and bottom of her spine. She was born with 3 holes in her heart she also needs ear reconstruction and has reduced hearing and vision. As a result of her jaw bone she has a tracheostomy which she copes suprisingly well with!

Lucie has two sisters, Kayleigh is 6 and Kyrie is 3. I am 28 and my husband is 30, wqe live in portsmouth in hampshire, where abouts are you?

Louise x
#8
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Hi - I can't help much either as Jack has ASD, Hypotonia and mobility problems but just reading this thread reminded me of what someone once told me - 'Special Children are given to special people' and nowhere is it more evident than on this site that there are so many special people out there!

I used to use another site to talk to parents of special Children - started using it when I was pregnant with Jack as it was/is a good place to discuss pregnancy etc.
They have an 'area' for 'Children with Special Needs' but they can't touch this site for support to us parents and I never look at it now I've found this forum. The section on their site for 2-3 yr olds is also extremely competitive - 'How many words can your child say?' 'Little Johnny just ran the marathon' etc etc. I'm SOOOO glad I found this forum - and I can't even remember how I came across it! Lots of luck Ginny, and everyone else, in finding someone who can give you some hope and answers. xx
#9
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Hi

Thank you all for your kind words of support and I appreciate what you are all going through, similar feelings, but for different reasons. This site so supportive, in emotional and practical ways, glad to be a member.

Bye for now

Ginny


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