They give you a real sense of community. I even filled in the online @bootsuk feedback form a while back as I wanted to honour how awesome they are. If you think, that’s just us; imagine all the other lucky customers they have.
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We have been working on Coraline's gross motor skills with her Physiotherapist which underpin her fine motor skills for eating. We appreciate how hard Coraline works when she is eating, due to her lower muscle tone which is a characteristic of Down’s syndrome.
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Dressed for the occasion. All went well at Coraline’s Cardiology appointment yesterday.
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Coraline had her monthly Cardiology check on Monday - they said the top atrial hole has closed itself and the bottom ventricular hole has almost sealed due to tissue growing around it; there's just a mm gap.
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Baby echocardiogram: Coraline was amazing today for her sedated heart echo at the Evelina. She didn’t have food for seven hours and was so well behaved.
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Considerations about weight gain for Coraline, our baby with Down’s syndrome
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Yesterday we noticed Coraline, our baby with Down’s syndrome, was having problems feeding. She was drinking less expressed breastmilk and taking longer to do so.
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Coraline will have her own portage worker from early next year until age three. They set objectives for play, behaviour, motor skills etc. and partner with speech language and occupational therapists.
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A consideration which we have for Coraline just now is one regarding visitors. I thought I would share this as it's something we are thinking about in our world with her at the moment, in advance of her heart operation
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We also liked it when they said, "she's cute; we see a lot of babies but she's really cute".
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Our daughter has two holes in the heart, a condition known as Atrioventricular Septal Defect (AVSD) which can be common in children with Down's Syndrome.
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So to the moment, the wonderful moment, when I met Coraline's Consultant Paediatrician together with Kevin (who had already met him). He smiles when he talks, so you smile when you listen. I told him, "I could listen to you all day".
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The nurses from the ICU, so taken with Kev's energy and devotion visiting and being with her, found a bed they had and wheeled it to our room for him (dads normally sleep in a chair).
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We began to learn that sometimes it is difficult for babies with Down’s syndrome to breastfeed as they can have difficulties latching on.
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We've been told to wash our hands, use anti bacterial gel and dry them with kitchen towel
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Our baby had a little scrap of blanket with her in the ICU and meanwhile I had a matching one. These were swapped between us so that she had my scent with her.
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