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 me I am doing fine forcing him to eat 10 meals a day. It sure would have made my life easier, not to mention Ryley's.
It proves again to me that those in the medical profession just see my child as a medical abnormality. They see him as Wolf-Hirschhorn Syndrome, not Ryley.
David and I work hard to take care of Ryley. We don't get breaks (ok, we get to go to work, what am I complaining about?), we live with incredible stress, but we will never give up. If I thought for a second that Ryley's health was being compromised, I would do everything I could to find a solution. On the topic of the PEG, I asked my paed every visit (it gets a mention in ever letter of correspondence) whether I thought it would be a good idea to get one. Every time, he said it would only make him heavier and harder to manage.
He was right about that. Ryley is heavier. He is harder to manage. But he can walk now. He can do so much more independently, he is having less seizures. He can keep up with the kids his age almost.
Trust your instincts.
Ryley is still with us because we will always make decisions based on what we think will achieve the best outcome for Ryley.
Does anyone else get what I am saying??