Monday, May 13, 2013


Thank God the meeting on 9th May 2013 went well.  All miscommunications resolved.

Neurologist thought we wanted to transfer to CGH until we had a pre-meeting today when she found out that it was the dietitian who told me that Jonathan has been discharged from KK.

She called in the senior consultant from the Orthopaedic Department to check on Jon's bone structure. A physiotherapist was also there. Spine is ok. His hip is in good placement. The only thing he observed was that Jon went into positioning a few times. I was confused so the explanation was that positioning is when they get into one position in a twisted way, then lock in this position for a short while. Sometimes the pain is very severe and in some cases the children will cry badly. Thankfully Jonathan is ok because he is very mobile. And he doesn't do this at home. Orthopaedic doc almost wanted to prescribe relaxant which I didn't want because I don't see Jon doing this at home. But his advice to us was never allow anyone to perform bone operation on Jon to correct any bone structure because he's very mobile and it will not help.

Other than this, everything else is fine. We should be getting a referral for physiotherapy soon to start him exercising again and get to keep the appointments with the dietitian. There won't be any transfer to adult hospital. I'm happy because all of Jon's records are at KK. I hate to have to start all over again. Moreover at KK, so long as we get the first appointment time, waiting is only about 15 minutes compared to adult hospital.

Thank you Jesus for being at today's neuro appointment. Next review Match 2014.

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