London, Baby!

I’ve finally found the time for an update....
We are back from our third hospital stay in two weeks.
Our trip to Manchester two weeks ago was hampered by the ridiculous fact that Scooby was doing ‘too well’. We had been called in due to the events of the previous entry below but in the few days between our stay in Lancaster hospital and being called down to Manchester, Scooby’s medication had been increased and by the time we got there, he was practically bouncing off the walls. None of the shakiness or tremoring was obvious at all and this made it very difficult for the doctors to be able to assess his situation. Of course we’re really pleased that the steroids and the anti-seizure medicines are so good at keeping his symptoms at bay – we wouldn’t have got this far without them – but at the same time, we know that they are not making the root cause go away and that by masking the symptoms it’s often difficult to get a true picture of what is going on. It’s incredibly difficult for the doctors to have to choose between them.
We left Manchester on the Thursday feeling downheartened that no progress seemed to have been made, but suddenly on that was changed by a phonecall from Great Ormond Street hospital the next day, inviting us to bring him down on Monday for a week. We had been waiting to hear from them, but we hadn’t expected it to happen so suddenly.
So on Monday morning Scooby and I headed down to London on the train leaving Richard at home with Turtle, Ace, Rocky and Baby.
For the full week we had had assessments, tests and questions about his medical history (starting from before his birth and going through the entire events of his seven years, to each department that came to see us, and that was a LOT). On Wednesday he went under general anaesthetic to have an angiogram (where they check all the blood vessels in the body for inflammation or restrictions) and he also had EEGs (where they stick electrodes on his head and test his brain activity under different situations) and tests to his muscles and nerves. He had blood tests and eye tests and reflex tests.
Everything came back normal. We’ve cleared up the question of inflamed blood vessels restricting oxygen to his brain, and seen that most of his brain activity is fine through the EEG tests. This still hasn’t led to a diagnosis, but it has narrowed the search once more. Great Ormond Street are now collecting all their ideas together and sending them to Manchester, and hopefully all his investigations will carry on there from now on. It was fun sending postcards from London, and seeing some amazing friends dahn sahf who made the perilous and expensive journey through the capital to come and see us, but I’m pretty happy that it sounds like it’s only going to be a one-off J
We came back to a baby girl so full of chicken pox that I couldn’t see the gaps between the spots in some areas. Her eyes were swollen with rubbing and she didn’t give me a smile at all in the first evening (although maybe that was also punishment for leaving). Thankfully, they’ve healed up really well since and she is back to her chirpy self.
Except for when she’s put down, of course. That one seems to be taking a little longer to get her cured of.
Now on with half term!!


  1. So sorry not to have seen you when you were darn sahf! The busyness of life (plus a shocking memory) was against us.

    Glad they're narrowing the options, still praying they find the conclusive answer.

    Mars xx
    (two days into half term, where's the gin?)


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