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…

I hate this unknown 

I feel awful writing this… I hate my daughters condition. It has robbed me of her first year, her first year is meant to be exciting and yet for a year I have been worried senseless.  I feel robbed of her future!  Will she just need a tablet? Probably not!  Will she grow old and…

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…

One tough week

I’ve been quite quiet recently. I promised to be honest on here and so here it is. Dad and I have been struggling this week. We know we love each other and we know we need each other but the stress of everything has really started to make an impact on us.  Dad has got…

To my undiagnosed princess

To my beautiful undiagnosed girl, I’m sitting here with you sleeping in my arms. I’m listening to the wheeze as you breathe, I’m watching your chest go up and down and seeing the odd twitch of your lips as you think your still having milk. You should be in your cot but today I’m keeping…

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…