Here is a post on why Coraline had open heart surgery. About 50% of babies with Down's syndrome have a congenital heart condition. Coraline has an AVSD.
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I am entering the 2019 Bloody Awesome Parents Awards (BAPS SEND Blog Awards) for parents and carers of children with additional needs.
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How fortunate we were to be heading to a hospital like this, where everyone we met lived these values.
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“I don’t know if I anaesthetised her or you hypnotised her”. I thought that was a rather lovely comment from the Anaesthetist.
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An amazing thing they do in the P.I.C.U. at the Evelina is to give each child and parents a notebook to write in about what happens daily.
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What do we say to the N.H.S.? Thank you! We appreciate you and what you do and how you do it.
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Our daughter was diagnosed at birth with Down's syndrome and an Atrioventricular Septal Defect. She had open heart surgery for it at fifteen months old.
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Everything is about love
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“Coraline is already teaching us all kinds of lessons and I can't wait to see her reaching her goals as she grows up and continuing to make an impact on the world.”
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“It is photos of her magnetic smile that can brighten my day instantly and is a daily reminder to stop and enjoy the little and big things going on around me.”
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Coraline is fourteen months old. Kevin says to me all the time, “I love her so much”, “aren’t we lucky?” and we both say to each other how amazing her little personality is.
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“You are so loved little girl. Always remember that there is no better you.”
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“In order to be loved you need to become a source of love.”
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What is life like with Coraline at one year old?
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“Trust that staying true to yourself, pursuing your dreams, doing the things that light up your soul, living your very best life will lead you on a path of adventure compassion and contentment.”
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“Look for rainbows”
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“Coraline has inspired me to see the power of a loving family - instilling in her the belief that she can be or do whatever she wants.”
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We would expect that it’s likely Coraline will start to talk from about 24-36 months, whilst for typical babies it’s likely to be from 10-18 months. She will work to develop clear speech.
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“Coraline reminded me of what life is about; love. Genuine, unconditional true love.”
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“I love the Guatemalan designer Isabella Springmühl. She is so great because she has this personality of showing the world in a great way, and showing that with Down Syndrome you can do anything in life.”
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