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?


  1. sort of getting somewhere but nowhere yet.
    Hang on in're all worth it!

  2. thinking of you.

    well done Leo for being good

    re MIL - pfff! silly woman