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.