Friday, 30 December 2011
Wednesday, 21 December 2011
Physiotherapist appointment for Nenna today*.
Putting aside the fact that I got us there at ten and the appointment wasn't until one, so Nenna, Leo and I went to the playground and then for fish and chips and Leo broke the cruet and the man in the fish shop was very nice and wouldn't let me pay for it, this is what happened **.
1. Physio confirmed our feeling that her balance is worse.
2. We should not push her to exercise too much as she is so thin that it will be exhausting for her. It is enough of a challenge for her to walk across the room unaided without falling. (She is constantly asking to be picked up around the house, now - lack of confidence or exhaustion).
3. The waking three or four times a night and screaming for between thirty minutes and an hour might be caused by sleep apnea. Physio is going to refer.
4. Coeliac disease *might* be the cause of both the lack of weight gain, the lack of muscle and the balance. She is going to ask whether the dietician tested for it.
5. She is going to suggest a multidisciplinary meeting to exchange information and discuss the way forward, in the new year.
6. In her opinion, Nenna does not present with the symptoms of Cerebral Palsy.
7. Lots of children do not get a diagnosis or prognosis with these kind of symptoms. Ever.
8. She is going to ask for an MRI scan (which will require another general anaesthetic) to see whether there is anything wrong with the cerebellum which might be affecting balance.
9. The failure to latch on and suck as a baby might have been caused by damage in the womb. Rather than the pneumonia she was born with, causing the failure to latch. There is no way of telling.
10. She is going to ask about Gentamicin Overdose.
Leo played by himself all through our session and was really, really good. I am so proud of him.
Which is ironic, in the light of B having a phone call from his mother this morning where she told him that she 'was ashamed' that Leo was sat on the sofa with no pants on at nine thirty AM on Monday when they came to say goodbye after their weekend down here.
* Postponed from last week due to the embarassing 'running out of diesel on top of the hill in the sleet and discovering one didn't have breakdown insurance' incident of which we will not speak. Okay?
** Have you noticed I am also using this blog as a handy memnonic device to write down what happened medically and when, whilst it's still fresh in my mind?
Monday, 12 December 2011
It's really getting to me now - we are constantly having to push and chase and poke to get things moving along, on every level - the benefits she is entitled to as well as medical stuff. The DWP managed to lose my carer's allowance application from June and that has only just been sorted - by me doing another application. We are involved with seven different health-care professionals - physio, speech and language, ENT, audiology, paediatrics, the health visitor and the GP; the disability social work people; various different benefits departments; and support workers from Nenna's nursery.
I think that the level of support we are getting on a pastoral-type level is fantastic - the social workers and the HV and nursery are all brilliant. As are the medical people, in their individual fields. As B has just said, they are an information-gathering organisation, not an information disseminating one. As for the DWP, the least said about them the lower my blood pressure will be.
Whilst we are drowning in all this, all Leo's crazy pre-school can focus on is that our payment for this month is one working day late. Snippy email and everything. To which B was equally snippy in reply. We are not moving him, incidentally - we think he is too settled and it's only twenty weeks until the end of the summer term.
I am trying to get in to the Chrismas spirit by knitting frantically in front of an open fire and shopping for slippers.