August and Everything After

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.
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.
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.


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.

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