My Girl

A bit of the great Otis Redding, somewhat schmaltzy, I’ll admit. But spring is in the air, my girl is in fine fettle; there are time when only some fine schmaltz will do.

So Easter has been considerably better than Christmas. At that point we were faced with a screaming, sleepless child and no indications from the docs what was up with her and what the future might hold. She seemed to be progressively degenerating and profoundly unhappy. We had no idea what the end point would be, with death a realistic possibility. We managed to cobble together some festive joy but it was undoubtedly forced as we had just been through an incredibly stressful few weeks and had nothing but further stress to look forward to.

But things have changed for the better – hence the schmaltz (spell-check is giving schmaltz a big query, so might be hard for readers for whom English is not their first language. It means anything overly sentimental, Fran: algo como ñoño in Spanish, no idea in German or Dutch etc – sorry!). We could focus on what AJ can’t do and worry about her never being able to do certain things. Will she ever regain the use of her right hand? Will her legs be forever rigid? Will she get back her fine motor skills? These are all uncertainties that might or might not be answered, we shall see.

Fo had a phone call with the neurologist post the latest MRI scan, which showed that there is still some damage. As ever any medical opinions in this blog must never be taken as carrying much weight but so far as I understand the damage is to the left-side of her thalamus. I have just had a quick wikipedia check and the thalamus is deep inside the brain and is described as “a kind of switchboard of information”. This means that a biopsy is not viable as you would be drilling down through too much brain to examine the damaged part. It also adds up to AJ not being able to control right-sided movement. We are having a meeting on Wednesday to get the full diagnosis from the MRI, if there is any significant news I shall attempt to pass it on.

But what I really want to focus on is what you can see in the photos above. AJ might still have a lot wrong with her but she is AJ again – default mode: giggling, never-ending kisses and cuddles and as easy as pie. AJ has always had an incredibly advanced sense of wanting to please. Nothing makes her happier if you give her a big “Thank you” for a sloppy kiss. She is enjoying ragging with me and Otto again and has even had a go on the swing.

She is also trying to do things. She had pretty much given up playing with anything and just threw everything on the floor. But she is now having a go with push button toys and we had a good iPad session yesterday and she was definitely making an effort to touch the icons and responding to what she saw (I’d recommend the SoundTouch app for anyone small or a bit behind on development – thanks Tash!) She is also vocalising a lot more than before. Even than before the brain thing happened, I think this is very significant as it means that she is progressing beyond where she was in some aspects.

She is not yet making sense as such but has a greater range of noises and a few that doting parents can identify as “mama”, “dada”, and “hello”.

The most important thing is that she is just comfortable in herself again. And most importantly for us she is sleeping well, in fact rather than screaming when she went to bed she now lies down with a self-satisfied grin and a giggle.

Fo has sorted out quite a lot of respite care, in fact, in some senses too much. We are going to the Isle of Wight next weekend with some old friends. We had planned it as some, much needed, time away from AJ, so that we could devote some time to Otto. It had also felt, at the time, that we could not realistically go to stay with people with AJ as she would have screamed the place down and would not have got any enjoyment from being away. We have lined up Cags and co, Mum and carers for a couple of nights. But as it has turned out we could have taken AJ too and she would have been fine.

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We had Otto’s Spanish Godfather, Fran or El Padrino, and family to stay. Again, when we originally organised it we were not sure whether we would be able to put them up as home was a bit a warzone but it was fantastic having them here. Otto has expanded his Spanish vocabulary from Hola, Adios, Gracias, to include Pipi, Culo, Pedo, Caca WeeWee, Bum, Fart, Poo.

Well, I think I will leave it there. I have got an empty house, the fire lit and need to press on with A Song of Ice and Fire, the fantasy saga that I have been reading for far too long. I am now on part 1 of the fifth book, this is already the second book he has had to split. It is becoming a bit of a chore as rather than just bringing on the cataclysmic clash that he has been cueing up for the past five-thousand odd pages he seems to invent yet another civilisation that we need to explore – no we don’t, we need to see dragons teaming up with dire wolves to fight the undead from the frozen north!! Of course we do!!

And breathe, apologies to all right-thinking folk who are not tuned in to this – it has had major exposure as HBO’s latest mega-bucks series Game of Thrones, as ever books far better than TV but watcheable all the same. Hopefully HBO have some artful editors who can trim the books considerably otherwise they will be paying for this for years to come and I can’t imagine that many people will be sad enough to stick with it (other than me).

BTW, while you have had Otis Redding, I have been listening to London Calling by The Clash, so not all schmaltz, great album, not one duff track on it!

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