Next Steps for our SWAN

As readers of my social media pages may have seen we were called up to GOSH Thursday and we weren’t really sure why. We knew it wouldn’t be for a diagnosis as all the tests had come back negative and there’s no way the 100k Genome project would have an answer within 2 weeks of…

Getting close to an answer?

This last week we have had a big old report back from GOSH detailing their findings from the neuro muscular team; we still haven’t had the results back from our long old stay up there but that’s under the neurology team.  It said everything we knew before, she’s globally delayed, she has fluctuating skills, kidney…

A letter to myself in 10 years time

I’ve seen a lot of letters that are addressed to yourself 10 years ago but I was thinking about the future so I decided I would write a letter to myself in 10 years time! To 37 year old me, I am writing this and I don’t know what has happened in this last decade….

The life of a SWAN

Swans are beautiful, and they have a certain majestic quality to them. The fact they are pure white to me always represents their innocence. My daughters a SWAN, not because she is a bird, but she is a child with a syndrome without a name.  She captivates everyone she meets with her beautiful smile, she…

Undiagnosed does not mean she’s fine

I had a strange conversation with someone over the weekend. They were talking to me about BBG and the end sentence stopped me in my tracks, ‘at least she isn’t ill, I know X and their seriously ill with Y condition. You should be glad’ I stopped in my tracks as they said their farewells…

4th baby I know everything right?

When I was pregnant with BBG, every appointment or stranger or friend and family member would find out it was my 4th pregnancy and just say ‘o you know what your doing then’. Deep down I was internally screaming 4!!!! 4 babies I may know how to do pregnancy but 4 children is a whole…

How is it nearly June!

So today is the last Monday of May! How did we get to June already it feels like only yesterday that it was Christmas and somehow June has crept up on me!  So this week BBG cut her first tooth! We are in shock BG and MO were our gummy bears and didn’t have teeth…