Wednesday, 15 May 2013

Good people = Good results

As I mentioned in my previous post (Just when you start to relax), we got a call from Julian’s high school last week and were told by the Year 8 co-ordinator that his teachers’ had expressed their concern about how constantly tired he  is in class.  The outcome from that was the dropping of two of his subjects, which starts this week - half days on Tuesday afternoons and Wednesday mornings.  

Last Thursday came with another good result, with the Physiotherapist attached the Pulmonary Hypertension clinic, and the school/community physio attached to the hospital both coming up to Julian’s high school to do a review and help both us and the school work out a ‘program’ I guess, to safely get Julian out of his wheelchair at school more and more until – fingers crossed – it will only be at school for the inevitable so-so health day.  This meeting came about after my ‘Stand your ground’ post, which spoke about how Nigel and I were pushed to have Julian out of his wheelchair at school, despite no one from the clinic ever having actually attending his school to see how viable that was.  We had had no support, nor advice on what we should be doing or how this should happen, and the end result was that Julian’s health started to decline almost immediately, and we made an ‘executive decision’ along with support and advice from his GP to have him back in his wheelchair again until someone could assess the school.  

Well, both physios were in agreement when it came to the size of the school.  One actually used the word ‘sprawling’!  After a walk of one of Julian’s busiest school days and a very long meeting (thank you so much to the Year 8 co-ordinator for her patience during this time!), we established a plan to – slowly – get Julian out of wheelchair at school, and unlike the demands from the clinic, the physios have put together a plan to gradually ease him out of such a high need to use it.  We’ll be starting with one of his half days, where he has just one double-period, walking next to his wheelchair while one of his mates pushes it up to the eating areas and back again.  The physio will be presenting her suggestions at the next clinic (next week) to have it approved by his cardiologist before it’s implemented at the school.

Keep your fingers crossed they agree to this and don’t try to push it further!

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