It’s that back to school time again when despite that fact
that it’s been 15 years since I left school I am overwhelmed by the desire to
buy stationery and new shoes. I love September it feels so full of promise,
potential and fresh starts, exactly how we are supposed to feel about spring?!
The one thing I have noticed this September however is that rather than feeling
full of zeal and enthusiasm I am exhausted. This summer has left me absolutely
drained.
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| Lake District Fun |
Despite having been a mum of a child with complex needs for
approaching 2 years now when someone says the word holiday I envisage
relaxation, sitting by a pool or enjoying a nice glass of wine watching the sun
go down. I really should have learnt that the reality of holidays with Imogen
is somewhat different. We recently spent a week in The Lake District. The days
were perfect, fun filled, relaxing and heavenly. The nights were very hard
work, Imogen was very unsettled, sad and full of a very ordinary cold but
knowing her as we do we knew that any kind of illness can get very scary very
quickly and so we spent most of every night soothing her and rocking her and
watching endless episodes of night garden while I dangled out of the window
trying to get a signal on my phone in case we did need to get her to medical
help quickly. It was almost surreal the contrast between the glorious days and
the hideous nights needless to say we all slept very well on our first night
home in our own beds, one road away from the hospital.
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| Pinch an inch (or a mm) |
There's no excuse for my desire to be near medical help given
that since our brief hospital stay in July Mojo has been doing brilliantly.
Eating, sleeping, reaching and even pointing which is our latest new trick. We
had a multi-agency meeting at the hospital this week which is an opportunity for
all the people involved in her care to get together and look at her holistically
and focus on what we can do to improve her development or help her maximise her
potential. I know it is human nature to cherry pick the positives from these
meetings however…. Mojo has made so much progress since our last meeting (six
months ago) that I don’t even see it sometimes. Significantly she’s eating
small amounts which six months ago she simply wasn’t doing. I include this next
gem for any of you who spend your days angsting about how little your child
eats. The consultant said she has worked with children with all kinds of neuro
disorders and eating problems are a common theme. She told me that a study was
done a few years ago looking at the effect a limited diet had on 400 children
with neurological conditions. This included autism cases where children will
only eat one food type (i.e only white food or only fish fingers) she said the
results concluded that even those on a very restricted diet were getting ALL of
the nutrition they needed from what they ate with the possible exception of
Vitamin D (N.B I took that as medical advice to take more sunny holidays!).
Anyway it made me feel much better about Mojo’s eating. The human body is a
very clever thing.
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| Med-tastic |
In the meeting we watched a video of a physio session to
examine closely her movements in order to decide the best muscle tone treatment
to apply to help her. As is her way Mojo’s movements do not appear to fit
into any of the camps 100% they are not wholly dystonic nor are they classic
spasticity. In the end we have started her on a drug to limit her ‘additional’ unnecessary
movements. Time will tell how effective it is. In theory it should help with
her tone.
This week I have a carers assessment at our GPs. Bizarrely I
am concerned about embarrassing myself because although I am incredibly well
supported and completely happy don’t you find that there is always a risk that
when someone sincerely asks ‘and how are you’ you might just burst into tears. No?
Just me then?
In other more entertaining news today Mojo laughed for 20
minutes at the word pom-pom. It was awesome.
