Hugs for Heston

I love kneeling at Heston's feet. I find myself in this position almost every morning.  Part of my morning care routine with Heston is putting him into his wheelchair and then kneeling at his feet to put on his socks, AFOs (orthotic braces) and shoes.  This might not seem like anything that exciting, and really it wasn't until one day it all changed for me. I was on my knees, getting things onto Heston's feet one day when I looked up at him and it sort of struck me.  I was reminded of the story of Jesus washing the feet of his disciples and I wondered if this was a bit like how Jesus felt.  The example of how we are to serve others and not think of ourselves as better than them can often be changed into different contexts, but I felt that physically sitting at the feet of another was too direct of a similarity to ignore. I sometimes imagine Heston's wheelchair is like a throne and I am serving him, literally kneeling at his feet.  But instead of ...

I love Heston's eyes. I love everything about them. I love his amazing eyelashes.  If I had a quarter for every time someone has said how long his eyelashes are, or how jealous they are of them I would be a wealthy lady.  Thick, dark, lashes for days are one of his trademarks. Along with the prominent, thick eyebrows, these features are both genetic, as well as shared by many other Sanfilippo kiddos.  (As a side note, I have often thought it funny that while everyone wants his eyelashes no one has ever been jealous of his eyebrows, even though they are equally as amazing as the lashes in my opinion 😉haha) I love the colour of Heston's eyes.  In my science class back in high school I was lead to believe that two blue eyed people would naturally have a blue-eyed child- that was how eye colour and genetics worked.  And yet, here we are, two blue eyed people with a son with light brown eyes.  Obviously my genetics class was an over simplificat...

Last week we had a great visit and time of respite at Canuck place. But mixed in with the fun and rest were three important medical appointments for Heston. So for those who like to follow along on how he is doing, this update is for you. The first appointment was with our doctor that we call our Sanfilippo specialist. His knowledge of the disease and its progression is extremely valuable to us, as he is one of the few doctors we see that has any experience with the disease. From him we were able to get some great advice on what things are important for us to monitor at this stage, and what maybe is not really needed. Both things are valuable as unnecessary appointments and stress can really add up when you already have so much to attend to and deal with. Our biggest issue currently and moving ahead are Heston's slowing bowels and this doctor was able to give us some suggestions as to what medications are the most effective and least pain causing for him. He explained that i...