So yesterday Sam and I went in to the room with the giant donut - Sam was very verbal in the fact that he was scared. It is a big machine and also in a room that is very 'hospital'. I told him 2 things - that Uncle Pete can do this kind of thing and he would be so proud of Sam if he could do it too and we could call him after the scan and they could compare notes! This settled him and he allowed the guy to tape his feet and legs together. Then they lay the blanket over him and with giant velcro straps they tied him to the bed. This was another point he was screaming and scared and I went delivered my second statement/blackmail here - 'if you are really good and lie still we will go to the shop on the way home and you can buy a new car! Well that worked a treat. I stayed in the room with him and he had a few verbal wobbles as the machine started whirring and then again as the bed moved in and out of the donut... but mostly he was absolutely brilliant. Trusty Bee was at his side and I chatted and sang to him the whole time. 7 minutes he lay perfectly still - I was so impressed with him. This was the first time he has done something like this without anaestetic. As soon as it was over he was of course reminding me of my 2 promises and I think he reminded me about 32 times between the end of the scan and actually stopping at the shop to buy the car. My memory is getting bad as I get older, but Sam was taking no chances!
On Wednesday we were in Starship for an hour with a child psychologist. He will be having 5 sessions over the next 5 weeks for 1 hour at a time. He has one-on-one with his new friend and they play and chat and she assesses how he is doing. This programme is often done with children at this age who have lived with chronic health issues. Sam has been vocalising more and more how he wants to 'rip out my tubes' and 'he hates his mitrofonoff' etc. So it will be good to hear her feedback after the sessions to see what we can do to help him cope with his challenges. As always the physical challenges are significant, but things of the heart are harder to quantify and treat and definitely more significant and impacting on his life at his age/stage.
Hsi UTI has cleared (yay!), but he is sounding a bit chesty and sneezing a bit, so am making sure we are doing his chest physio twice a day and keeping a tabs on what bugs are at school.
I leave you with a photo of him with his new AA membership card - he was telling his Aunty Elaine all about it,.... if only she could have seen down the phone! I know there is skype, but we were just using a landline phone - gosh, feels very last century.....
Thanks for keeping in touch with the little man!