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…

When enough is enough

As I approach BBGs 2nd birthday, a milestone I thought I’d never see, I was looking back at what tests and procedures she has endured over the last year, and it got me thinking: when do you say “no more”? To me my beautiful daughter is living on bonus time anyway, she is doing things…

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…

Christmas Time!

Last Christmas was BBGs first Christmas time. We were so excited to celebrate as a family of 6, I’d brought a different outfit and pj set for each day of the week of Christmas back in early November. I had excitedly brought Christmas presents all the way back in September/October. Then our world changed. We…

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 haven’t blogged for a while…

I haven’t really blogged for a while… my mind just hasn’t been in the right place for it. Other than physically being busy, with moving house, appointments, run up to Christmas and many other things. Mentally and emotionally I’ve had nothing in me. It’s really stopped me wanting to write as I didn’t know what…