Month: April 2012

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Jude’s New Room…..

…..is coming.

Veteran bloggettes will remember a few years back that we looked at converting our old house in all sorts of directions to provide a suitable living environment for him. A wet room, a hoist, all his equipment and access all proved too much for our house so we had to move.

Rachel did good and we found a great place with a downstairs extension which looked perfect and we moved in August 2010. The council provide a grant for the adaptations, agree the plans and tender for builders – it sounds such an easy process…it isn’t! But, almost 2 years to the day we moved in work will commence on Jude’s New Room at the beginning of August. It’s a big job, upto 12 weeks work (and disruption) but it will be worth it.

Jude will get his own entrance to the house, a wet room, ceiling track and hoists and (very importantly) improved insulation in his room so we can scale back the heating bills a little bit.

In other news, Wolves have been relegated. That made Nathan sad. 😦

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Jude’s Progress

The little man has been doing really well recently. We’ve got on top of his repeated chest infections with a combination of suction, inhalers and physio and with winter drawing to a close hopefully we’re past the riskiest stage.

At his review meeting last week he had Carbamazepine added to his medication regime and his Ketogenic diet was tweaked a little. He’s also been referred for Vagus Nerve Stimulation surgery which is an interesting development. I think we’ve both come to terms with the likelihood that we will never get completely on top of Jude’s seizures but the possible benefits of VNS are that they will be less in frequency and severity – that alone is probably enough to make it worth trying.

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