Brainwave, Dinosaurs and new friendships

Last Friday we went to Brainwave again for Imogens’ reassessment. (You can read about our first visit in April here).

This time we stayed the night before in a local Air B&B. It was lovely to have more space then just a hotel room, but Matt and I were ashamedly thrown into a bit of a spin by a lack of WiFi and TV! Thank god for 4G streaming to allow us to watch a bit of tv while Imogen went to sleep.

We arrived at Brainwave in the morning and started the day catching up with our physiotherapists Sri and Melanie and updating them on Imogens’ progress. They were really pleased with how far she’s come in 4 months and basically had to throw away the old programme completely as she’s progressed beyond it and write a whole new one. They also felt she seemed much more alert this time around, and her personality is definitely becoming more obvious.

She got 3 certificates for improved head control, mastering hand to foot play and independent rolling over. Who doesn’t love a certificate?!

Her new program is all based on sitting and weight bearing on her lower limbs. And we now have one of these in our living room for bouncing on and rolling over.


They assessed her gross motor skills to be around 4.5-5 months and her hand skills as more developed at around 6 months. We were quite pleased with that summary. We really hope we can get Imogen independently sitting by the time we revisit in December.


After a quieter day on Saturday when I actually made it to the hairdressers for the first time since Imogen was born, we headed South again on Sunday to meet a family we have spoken to often over the last year, but never yet met.

Emma and Simon came into our lives quickly after Imogen’s diagnosis. Infact when I put out my first message on the 3P facebook groups, scared and distraught, Emma was the first to respond, not able to offer me an insight into the future but to say her family were in the same position, having had the exact same diagnosis for their daughter Nancy just 2 weeks earlier. Nancy is 3 months older then Imogen and their deletions span exactly the same region covering pretty much all the same genes. It’s crazy considering 3P deletion is so rare that you wouldn’t expect more then one a year born in the UK, let alone 2 with exactly the same part missing. The similarities with the family didn’t end there, we both have 4 year old boys too, and both dads commute into London for work. Myself and Emma hit it off straight away over Facebook Messenger and have messaged at least weekly ever since comparing research, discussing the girls, their achievements and struggles and our own ways of coming to terms with the diagnosis. Having that support has been such a lifeline for me and it was wonderful to finally meet up at the weekend. I think life long friendships have been formed all around. We also enjoyed a lovely day at Knebworth House in Hertfordshire, roughly half way between our 2 houses, and the boys particularly enjoyed the dinosaur trail and the adventure play ground.

We’ve decided the next meet up will be at one of our houses so we can enjoy some well deserved glasses of wine once the kids are in bed!

I’ll leave you with some pictures of the Imogen and Nancy together – it was such a wonderful moment to see them interacting with each other. They are both such beautiful and special girls.



One thought on “Brainwave, Dinosaurs and new friendships

  1. Absolutely lovely. Imogen is coming on so well and it’s down to the dedication of her parents that give her so much love and encouragement. Well done mummy xxx


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