Saturday, 16 February 2013
Life is one big appointment
Those who know us, or who have tried to arrange to see us recently, will know that we have had a lot going on in the last 6 months or so. It is not looking after Jessica that has been putting pressure on us, or even the fact that we have a new baby. In fact, how well Jessica has been developing, and having her new little sister, have actually been pretty much all that has kept our heads above water the last few months.
It is not just caring for the disability that goes with having a disabled child; it is everything else that goes with it. We have had a run of so many different appointments; sometimes up to three a day (all in different places of course!). And with that comes chasing referrals, chasing doctors’ letters and making sure that communication between various teams comes together etc. I think Jessica could do with her own PA!
Jessica has had appointments with a neurologist, and then subsequent EEGs, sleep studies, ENT appointments, spinal clinic appointments, orthotic appointments, as well as her regular physio, OT, speech therapy appointments, meetings at nursery etc. On top of that, we have had appointments with reps about the bed, bathing chairs, potty chairs, wheelchairs, special needs car seats, high chairs, as well as communication aids such as eye gaze computers, switches etc. (I will do another post on these another time). In addition to all this, we have had to make decisions about applying for a school for Jessica to go to in September, which involved looking at a variety of schools and completing a very lengthy form to apply for her to have a Statement of Special Educational Needs. At one point, I was about to say to Jessica’s team that I need a few less appointments, when they literally said, with diary at the ready, that we needed to make another nine appointments!
It has all been a bit full on. However, most of the equipment is sorted, and if we don’t yet have it, it has been ordered. A lot of the current medical assessments needed have been done, with a plan in place; and the school application is in (we will find out in April which school she has been allocated to) so I am hoping things will calm down a bit. I want to be able to see our friends again, and feel more like Jessica’s mummy, rather than just her key worker and PA!
Until the next rush of activity at least.