Filed under: General
I’ve been meaning to blog aplenty about the Welsh Assembly elections amongst many other things, but unfotunately - as ever - real life has intervened. I’ve had a bad bout of tonsillitis (the first ever!), which has left me feeling rotten and not in the mood to do much. The one thing I have been doing is trying to get William seen at the hospital, something which has taken maximum persistence.
However, last Friday it all paid off and we finally got to see a neurologist and have the CT Scan I’ve been waiting for William to have for what seems like forever. Despite my most rational thoughts, I could not quite put aside the fear that he had pressure onto his brain from somewhere - resulting in both the movement problems and the turns that appeared in both his eyes. I knew that he should also be fitting/blacking out, if this was the case, but in the middle of the night, you always fear the worst.
The actual diagnosis wasn’t as bad as I’d feared (and bearing in mind we’d been everywhere through rickets to arthritis the fear was fairly large!). Basically, when William was born (prematurely, as you may recall), part of the white matter (which is located at the back of his brain) hadn’t fully developed. The white matter helps to move transmissions within the brain - but doesn’t process the information itself (which, I believe, is where your grey matter comes in). The white matter is also linked to movement, which is where it is affecting William. There is nothing really they can do about it. He’ll probably have physiotherapy and may have orthotics (which are special pieces in shoes that help posture). It’s also linked to his eye problems - but won’t affect them doing surgery, if they want to, to straighten his eyes out.
William won’t ever be an Olympic gymnast, but then again, I think that was always a long-shot, given my genetic leanings (to obesity) and his father’s genetic leanings (to be unco-ordinated - you want to see the man dance!). So, we finally are arriving at the end of the beggining. William has to have another scan (an MRI this time to confirm diagnosis) which he will need to be sedated for and we’ll have a meeting with his neurologist to talk about next steps. He actually went through the “big doughnut” (CT Scan Machine) fully awake and with eyes on stalks - a complete star and as co-operative as ever.
We’ve had a quiet weekend to take in the news and get over what feels like a battle, just to get him seen. At least now we know we can push him to take exercise, because we’re really not doing any damage. He also won’t be getting away with the “carry me!” excuses of old (those “wobbly” legs are something the boy is just going to have to get used to!). The other thing the consultant said was that he’s likely to be quite bright - as the brain will concentrate on the grey matter stuff, which I suppose is also something on the positive scale.
So, now you’re all up to date, I can actually get back to blogging about other stuff!

