Test of parenting

This past 7 days has been a massive test of parenting! BBG collapsed in an episode on Sunday while outside on the patio. Sadly she fell wrong. Dad made her move her arm, watched as she played and saw that she was able to play and move her arm and hand ok. He put her…

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…

Postcode Lottery

I’d heard of the postcode lottery but never really understood what it meant until now. Back in November you may recall I moved, well although the move was only 3.2 miles I technically crossed boundaries of councils and also healthcare. My health visitor had to change and all our hard work thinking about getting an…

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…

Anxiety is so high

This last couple of weeks I have felt the lest motivated ever!  I honestly think it’s all down to anxiety about Thursdays hospital appointment at Great Ormond Street.  Last time we went to see this particular consultant (we have a couple up there), we were given a list of numbers for therapists and councillors and…

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…