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Life in Our Bubble: Lockdown Days

06.06.20

Our daughter now has about half the paid care each week that she’s funded for. We reduced her PA team to two as lockdown started to avoid any undue risk of exposure to coronavirus from the PAs supporting other clients in the community. They keep in regular touch, sending phone videos to amuse her. She,


Life in Our Bubble: Merry and Bright

24.12.19

Our daughter has been having a rough time with her health recently and has spent too many days lying on the sofa feeling wretched and unable to do the things she loves to do the most.  There have been no trips out to the cinema or cafe for her, no poodling around with her PAs


Life in Our Bubble: Respite

11.10.19

Our daughter’s respite breaks stopped a couple of months ago. We’re really missing them. We fought tooth and nail for these when she was little as we were becoming burnt out and needed time to recharge our batteries.  It was tough being assessed on our vulnerabilities while everything was still unravelling with our daughter.  She’s


Life in Our Bubble: Team Meeting

23.04.19

There have been changes to our daughter’s team of PAs recently with a couple of new members now on board. They were highly recommended.  Finding the right people to support our daughter doesn’t come easy. We always have our eyes out for somebody who can offer intelligent care, is creative and empathetic and who will


Life in our bubble: She'll always be

Life in our Bubble: She’ll Always Be

06.03.19

Our daughter was first referred to paediatric services when she was nine months old. This followed our concerns that she was not reaching her milestones and did not seem to be interested in her surroundings. Despite the many assurances we were given by the health visitor that it was only a matter of time, we