Ben’s health has increased exponentially in the last 24 hours. We have been transferred back to Shriners, which does our hearts all good. It again feels like coming home – these are our friends, our family. I am still overwhelmed by the emotion of coming back – they take Ben in and gently wash the surgery off him, check his vitals, put a fresh gown on, nurture him with hugs and kind words, and of course a gift or two for being brave.
Coming back though, we noticed we are missing some of our dear friends who have now been discharged. I know from experience that the memories of our endless hours walking the hospital hallways together and playing hospital hide and go seek (not easy when you are in wheelchairs and walkers) are treasures that will remain long after our pain has eroded. I am so honoured to have met our friend Robin and his amazing family. Robin has Diastrophic Dysplasia, which is a form of dwarfism. Diastrophic means twisting, and that is precisely what Robin’s spine was trying to do – from the inside out. His surgery was very successful – his hump was erased, and his spine straightened – he continues to amaze anyone who comes in contact with him of his incredible resilience! He may be little on the outside, but he is a giant inside! (Side note: the term midget is considered extremely derogatory – little person is a more acceptable term). We also miss our friend Vincent, who has cerebral palsy and underwent what they call Rhizo surgery – a procedure to greatly improve the way he walks. Following his surgery, he had to do 6 weeks of intensive physio…we are so lucky to know these families!
Benjamin has started walking, which has improved his lung expansion incredibly (combine with his breathing physio). We took his oxygen off yesterday. He is still breathing quickly and desatted occasionally through the night, but he bounced back quickly. We are now starting to look towards going home, where we can finish healing in our own home.