Sunday, April 2, 2017

Some humourous musings ahead....

First up, sorry for the long silence.... and for all those wondering if Sam needs his legs broken and re-set.... thankfully the answer is NO!  The CT Scan came back with nothing of concern re his bones, just a muscle issue, which the physio is already drafting up new exercises as we speak!  It all sounds so easy, but even fitting in his twice daily chest physio amongst normal family life is a challenge sometimes.

Sam and the school Year 3 group went on a school trip to a local venue and took part in all manner of team building exercises.  I went to help and it was an eyeopener.   Having watched Sam at play I would have to say he works best solo!  The photo below makes me laugh every time - the whole team is doing the right thing and Sam decides what he wants to do!

Tomorrow I need to call a lady I met at church today to apologise for my nuttiness!  There were about 10 kids in Sams group all making crosses out of coloured jellybeans.  Imagine lots of noise and hands in the lolly jar etc. At the end a Mum came up to me and said, 'I saw Sam lick a jellybean and put it back in the jar'.  I was so surprised that he had that my response must have seemed so weird without knowledge of Sams uniqueness! I said, 'Oh are you serious?  Did you see him do that?'  She said 'Yes I definitely saw him lick it and put it back'.  At this point I replied, 'Wow, that is SO cool... I am so proud of him - that is awesome'.  I turned to Sam and said, 'Well done for licking the jellybean buddy - great work'.  At this point another group called for my help and I wandered off, but I did note the Mum was staring oddly at me.  I  was telling Candace about it on the way home and her look of horror and gasps of 'Mum that is so grosse', helped the penny drop that the woman was letting me in on inappropriate behaviour that I may need to address... instead I was commending the boy for trying food (if jellybean is found in a food group?).

The week ahead is busy for Sam and clinics. 
Monday:  Gastro Clinic at Starship,09.30am
Wed:  Clinical Pysch nurse at Starship 12.30 - 1.15
           School - meet the teacher 2:15
Thurs:  Sam has a half day at school,afternoon he has a special surprise friend coming to see him
Fri:  Audio tests Middlemore Hospital 08.30

I forgot that last week Sam brewed another UTII - he came home from school early on Monday and Tuesday I dropped in a sample at the Manukau Super Clinic.  I have done this many many times over the years with zero issue.  Well it seems that the week before there had been a change in systems and they would no longer accept any samples without thei letterhead.  I had been using a generic hospital/starship lab form, but now I needed a CMDHB lab form.  I understood their reasoning, but I understand their reasoning.....but I managed to convince to let them accept this one last sample with promises of me going to get the approved lab forms from now on.  I pretty much grovelled and begged - it worked!  So Sam came back with another uti.  I had emailed his Paediatrician about Sams unwellness and an out-of-office emal bounced back as he was in Australia.  That evening I was at netball to pick up Candace at 7pm and I get a call from the Paediatrician - seriously how good/kind/amazing is that - he called me from Australia with a plan!  It was very very appreciated.  As it was out of hours, the plan required going to Middlemore to get the prescription from a Dr that said Aussie roaming Paediatrician had contacted.  Then a trip to the out of hours pharmacy. I was so very grateful for the attention to detail from the Paediatrician and his team and to Francis for doing the night run to get the script and drugs. around 9:45pm Francis arrive with the drugs, so Sam could take his first dose promptly. It was truly a team effort and the uti seems to be clearing and Sam is well and happy.

Thanks one and all. XX