When all your strength has disappeared

This last month or so has been crazy. We’ve had the summer holidays which I am sure most of you will agree with me saying, that although I love seeing my kids and being with my kids for the 6 weeks, they need routine and school. Just everything goes a little off the wall regarding…

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…

Mummy Keeping Up With the Joneses

As a Mum I can’t believe how competitive Mums are. It seems you can’t go anywhere without someone saying their kids are better or their parenting skills are perfect. You go to a baby class and the mums are talking about the organic home made dinners that they make and purée down for their babies…

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…

An Unexpected Adventure to Hospital

This morning my alarm woke me up at 6.30. I stretched my arms and legs and dragged myself into BBGs nursery. She had slept through the night and for anyone who breast feeds you will understand the ache I was feeling, plus BBG never sleeps through the night.  Bleary eyed I bent down and scooped…

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…