A Blog About a Bloke-Living with WHS

Sometimes words that are meant to be comforting, actually end up being anything but. Today Ryley had his gastroenterologist appointment, and really, it pretty much one of those visits where we are in and out. He is only being monitored at the moment ($125 later). The doctor is lovely and we have been seeing him since Ryley was a baby, but today he remarked ever-so-casually "I can't believe how well he is...I mean...I didn't think he would be still with us". Yes, ok, it is great to hear he thinks he is doing well, but really? He didn't think Ryley would still be alive? Not exactly the words I really want to hear thanks. I agree that Ryley is healthier both nutritionally, neurologically and developmentally by being on the Ketogenic Diet and being PEG fed, but would he be dead right now if I hadn't got the PEG? Perhaps one of the specialists could have alerted us to this a little earlier and encouraged the PEG insertion when he was younger rather than tell m...

For those of you on FB, or who follow Blog about a Bloke on FB, you will see that I slipped in some pretty cool news about Ryley's weigh-in yesterday at the RCH. Now, as most people are aware, one of the characteristics of WHS is slow growth, so most of the children/adults tend to be fairly small. This has always been Ryley. He has always been tiny. In fact, he still is tiny. The funny thing is, that now, he actually is on the "typical" growth charts for a child of his age. Allbeit on the bottom, but really, that is a mere detail. Length wise, he is not really near the typical size of an 8 year old, but he is still growing upwards at a good pace, so I am happy. In fact, I am happy that he is growing full stop. Because, for a couple of years there, he really wasn't doing much growing at all. His weight really didn't change for two years (age 4-6). So it is quite a change to see him growing. In some ways, it is a like a small victory to get on those so called no...