Onslaught of services

We were bombarded with appointments. Dietician, Paediatrician, Physiotherapy every week at the clinic, then Speech and Language and Occupational Therapy, Genetic counselling at Guys in London, all within a very short space of time. We went from near enough nothing to what seemed like everything overnight.

My head swam with appointment dates, so much information, physio exercises that I had to do with Violet every day, new dairy free foods to try, support groups or charities to contact for help. It was hard to keep up. But I soon adapted to my new role, my daughters PA, voice and champion. I would do anything for my baby girl, anything.

We have so many more services, clinics, charities and professionals involved now since the early days. Violet has a “team” of medical professionals.

For me the hardest part of all of this is the constant chasing up and highlighting of issues. It is never ending and it’s exhausting. I am constantly on the phone to numerous secretaries most days. I am thankful that I am naturally an organised and proactive person because you can’t let these things slip. It would mean poor care for Violet and that is not something I am prepared to risk. 

On the flip side all of these services have given us support, encouraged Violet to grow and improve her skills. Physiotherapy has made an incredible difference. 

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