World Down Syndrome Day

It’s World Down Syndrome Day and we’ll be supporting our local North East Lincolnshire DS Family Support Group who have really been there for us since we moved up north (more on them another time).

As well as being a day of fun, global events – I’d like today to help break down barriers and open up life opportunities for anyone with DS.

Here’s our boys in their odd socks to support of #wdsd17

World Down Syndrome Day

Singing Hands

We were lucky enough to watch a Singing Hands show in York yesterday morning, ahead of Down’s Syndrome Awareness Day which is happening tomorrow.

We were pretty star struck meeting Suzanne and Tracey from Singing Hands who are big stars in the Makaton Sign Language world.  

We’ve practically worn their DVDs out at home – and I’ve learnt most of the little signing I know from watching them.

George adores them.

They were both so lovely and generous with their time and the work they do promoting Makaton is amazing.

Singing Hands

Chest infection 

I am cuddling George in a hospital room as I type.

He’s had a chest infection for weeks and weeks – which two rounds of antibiotics have failed to shift.

He took a marked turn for the worst last night with a high temperature and rapid breathing, so we brought him in.

George had a chest x-ray which confirmed an infection, was given yet more antibiotics and oxygen throughout the night.

He’s groggy today, but sounding better than he did. 

Doctors are observing him throughout the day and will make a call later if he needs another night here.

Once again we’re reminded how amazing the NHS is.

This boy certainly keeps us on our toes!

Chest infection 


George had his first post-surgical checkup at Sheffield Children’s Hospital today.

The news was all very positive regarding his recovery from stomach surgery (almost a year ago) and his ongoing Hirshprung’s condition.

We no longer need to dilate the poor little guy (insert a metal rod where the sun doesn’t shine once a day) and he doesn’t need to go back again for a year – unless there’s any sign of a problem.

I’m so pleased it went well as moving to a new area and into the care of a new surgeon was always a concern for us.

George is amazing.