The effects of Jude’s hip injection a couple of weeks ago are….mixed. His knee which was pulled up and the sign of a problem has come down and is more like it was but he is still not quite right. Is it pain or is it behavioural but we cannot get him to settle in his pushchair which makes going out a chore.
Back in the old days, when all Jude did was scream, we rarely travelled far but over the last few years we have had relatively few problems but now even driving into town is a major event. After an uneventful 2013, this year is proving that even the simplest tasks are magnified – and we may not be finished.
The surgeon is still contemplating the more significant surgery which will require Jude to be in a hip splint for 6 weeks or more – I dread to think how he will react to this. As a family, even this relatively minor set back of the last few weeks is having a major impact on our day to day lives. Going out together is no longer the norm, it is the exception.
We have increased some of his medication, Baclofen, to see if it improves his muscle tone and they are also considering a Baclofen pump, a small device implanted in his abdomen which would send the drug direct to his spinal column. With that pump under his abdomen, his Vagus Nerve Stimulator under his chest and his GI tube into his tummy Jude risks becoming more machine than boy 🙂 RoboJude.
And to cap it all off he has a loose tooth. I can’t even bare to look at it. I have feeling we may well be finding it in his nappy which will make the tooth fairy shudder.
Jude Marrey's Blog 