Test results are sort of in

This morning started as any other morning. Had our specialist health visitor come round and talk about what’s happened; how BBG has developed, if there is any more support we can get, and to go through new reports and what has happened in appointments. We left on the usual statement of if/when we get a…

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 milestone emails break my heart 

I got a milestone email today about what my baby should be doing at 14 months, it broke my heart. Every month for about a week I get a milestone email from around 5 websites that I signed up to when I was pregnant. Every month I open it up, then go onto the different…

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…