Achievements and Kindness

Well, a lot has been happening in the beautiful bubble of the Piam Brown Ward in the last week.

The girls, myself and James had a blood test and are now waiting to see if one of us is a match for Ben.  It’ll take a few days, but we hope for some news in the next week or two.  The girls did so amazingly well and got through the blood test with no drama and enjoyed a little piece of lemon cake after.  Ben was very impressed there was no upset.  He didn’t enjoy needles or cannulas when he had to have them and was very pleased to see his sisters totally okay after their test.

Ben enjoyed a surprise gift of an epic Lego Minecraft Mountain set from some of our dear friends, Richard and Nicky.  He’d been feeling rather poorly the morning that arrived and the minute it showed up, he found the strength to get out of bed and spent hours and hours (and I mean HOURS!) sat on the floor concentrating and building.  The instructions were about 350 pages long and he spent about eight hours the first day and then finally went to bed about 11.00 pm and the next morning, was up at 7.00 am to finish building the last four bags worth of Lego.  There were a total of 24 bags and he finished the last four by 8.30 am.  All the nurses think we should challenge Lego to suggest a build to do that will keep him occupied, as he is so quick at building!

Another achievement for Beeps this week has been having a feeding tube fitted.  This is normal at this point, to ensure all the right nutrients are going in to the body as all this magical medicine is a delicate balance on the system.  Ben, in general, has been coping with an awful lot in recent days, but admirably and he continues to surprise us with his inner strength.  Just the same strength we see being shown in the girls.

Ben’s loved receiving messages and cards and letters, thank you so much and if you can spare the time, please keep them coming.  It can be really boring with mum, dad and the girls sometimes, so a friendly word, an encouraging sentence a bit of cheerleading from the sides is much appreciated.

Kindness is a gentle word, yet an abundant one.  We have been overwhelmed by the abundance of love, support and kindness shown to Ben and our family in recent weeks.

Today, Friday 20 July, marks a full month from when we stepped into the Paediatric walk-in for a blood test on 20 June, which started this whole journey of recovery.  Thank you for your kindness.