Dribble Bubbs Review

For the last couple of months I have been trialling the Dribble Bubbs bed sheets and onesies. All I can say is wow. MO still sometimes struggles with setting himself during the day and night. This from researching and talking to other parents of Autistic children, is quite a common thing. I’ve been searching for…

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…

Why I’m grateful for being under GOSH

This week, we had a few appointments and it made me realise how although we are undiagnosed and that is extremely emotionally draining we have it a lot better then some in similar situations.   We went to our local hospital who just advised that we see GOSH so much, there is no point going…

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…

GOSH stay

This week as my last open and honest blog mentioned we were in GOSH. We weren’t expecting to have to stay up there for a night let alone 2 and thought it would just be one very long day of testing like before.   We got there and knew that BBG was going to be…

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…