Time to meet our little Rory

Some people might already know all about Rory but I’ve had messages asking for a blog about him. So this post is a brilliant opportunity to raise awareness for Rory’s conditions.

In 2014 me and my mum both discovered that we were pregnant, it was quiet a shock as you can imagine. We would have double booked midwife appointments and would go to each others scans. Mum went to a scan and they found Rory had thickness of the back of his neck. This is a  marker for Down Syndrome. She then went on to have a blood test which showed the result that the chances of Rory having Down Syndrome were 1 in 5. Due to this mum had to have  more detailed scans at the Norfolk and Norwich hospital. The scans went well and on the 12th January I gave birth to Elsa and  on 29th January mum gave birth to Rory. He was born on his due date which only 5% of babies are, but babies with Down Syndrome have a higher risk of being premature, We have been told that Rory is amazing and it is very rare for this to happen. As soon as he was born mum and dad could tell that he had DS. He was perfect but was very poorly, he was transferred to the Norfolk and Norwich hospital were they diagnosed him with Hirschsprungs disease. This is a disease of the bowel, the cells in the intestine don’t work. This meant that Rory couldn’t go to the toilet, he was very, very poorly at this stage and we didn’t know what was going to happen. That’s when they meet Mr England. He is Rory’s Dr and surgeon, at 3 days old he gave Rory a stoma. From then till August Rory had colostomy bags. It was a tough 6 months, getting used to a baby with bags that needed changing instead of nappies.

In August last year Rory had pull through this meant Mr England reversed his stoma. So instead of bags, Rory would go to the toilet in his nappy. The operation went well and since then has been fine without his stoma. He will always have Hirschsprungs and it effects people in different ways.  Rory has also been  diagnosed with Cataracts, hearing loss, PFO, PDO and hypermobility ( he can pop his joints out, its pretty gross)

People seem to judge and think that our life is all doom and gloom because Rory has ‘problems’. It’s really not doom or gloom. Sometimes it is hard and sometimes he is really poorly. but he is a happy, cheeky little boy. The stigma towards people with Down Syndrome is still an issue. There has been times where we have been approached and lets just say some horrible things have been said to us. If you are in this situation then you will know what I’m talking about.

At this moment we are learning Makaton (using Mr tumble) to make it easier for Rory and helping him anyway we can, in return he makes us laugh and smile. He is the most happiest baby you will ever know!

I wouldn’t change him for the world but I would change the world for him.

Rebecca

xx

To learn more about Hirschsprungs google champs appeal and to learn more about Down Syndrome google Down Syndrome association

 

 

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