Our weekend at the Evelina Children’s Hospital

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We’ve been to the Evelina Children’s Hospital in London for some precautionary evaluations. He had two appointments over one weekend. At first appointment Henry needed an MRI scan on his head and spine to check for compression. The proceedure would require Henry to lay very still inside a large tubular bed with a scanner taking images of his head. It would take roughly an hour to capture all images. Sedation is recommended for the MRI but there are increased risks with Henry’s condition, this is due to his small airways; so it was preferred to attempt to get him to sleep through it. Our Henry loves to wiggle around and doesn’t believe in daytime napping so this was going to prove very difficult. We gave him a big bottle of milk and played his musical bed time sheep, but who were we fooling? the bright hospital lights beamed down into his twinkly blue eyes and he knew it wasn’t bedtime. We eventually had a bright idea and put his woolly hat on. We pulled it down to cover over his eyes which gave him the illusion that it was nighttime. With this and a little putty in each ear (because the machine is very loud) he drifted off. I was allowed to sit in the room with him whilst he was being scanned but Daddy had to wait outside. I sat in a very large and daunting room watching my brave boy, hoping he would stay asleep for long enough! I had no idea how long we’d been in there but every minute felt like an hour. After what seemed like all day the scan was finished and Henry came out all smiles as per usual.

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The next evening we visited the hospital again for an over night sleep study. Myself and Henry arrived at the hospital at 6:30pm and said our goodbyes to Daddy who would meet us the next morning.
A little room with a bed and a cot was our home for the night. This was our first night away from Tom since Henry came home from intensive care. “Just me and you tonight Henry.”… what I didn’t know at that moment was that Henry’s sleep study required video footage so we had to be filmed. So actually two nurses, a paediatrician and a group of students would also be spending the night with us! Let’s just say I was scared to scratch my nose that night!
Henry was wired up to lots of different machines that would check his breathing when sleeping. Children with Achondroplasia can develop Sleep Apnoea. This happens when the walls of the throat relax during sleep interrupting normal sleep, resulting in blockages in the airways. Henry was attached to total of 14 wires 2 radiation belts and a nasal cannula. Once all the machines hooked up It was time to sleep… This was going to be a fun night! With his favourite girl band ‘Little Mix’ on the iPad he was as happy as Larry and not bothered by the commotion at all. He soon drifted off no problem. Despite all the wires Henry managed to sleep unaffected. I was very proud, even if the experience had drained me! I should imagine my performance of changing a nappy at 3am with a baby that wants to practice his rolling, connected up to spaghetti junction gave the team watching a giggle!

We will find out the results of these tests in February at our next check up appointment, but have been told that if there was any concern we would of been informed straight away. So for now no news is good news!

Updates soon!

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Little Mix’s number one fan

Dear Little Mix.

I’m Henry and I’m your smallest but biggest fan. My favourite song is ‘Shout out to my Ex.’ I make mummy and daddy play it all day every day and if it comes on on the radio I laugh all the way through. It calms me down when I am being cheeky and makes me happy when I am sad. I love watching your video, me and my Daddy dance all the way through! I hope that one day I will see you in concert but for now I will keep listening to my CD that my Mummy’s super cousin got me for Christmas from Jesy Nelson herself. She even wrote a message in it to me!

Lots of love,
Henry Cocks
Aged 7months xxxx

 

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