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.

My message.
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??


  1. WOW! What a comment to have a doctor say. I'm so sorry you had to hear that.

    I completely understand what you are saying. We have had the same discussion here several times already and Magnolia is only 4 months old. The problem is I have always wanted to trust the doctors before I had Magnolia. I mean, they are the doctors! They went to med school, I didn't! They should know more. Right? But we know our kids and we have to trust our instincts.

  2. I can't believe the doc said that! Sometimes I think it's just crazy what comes out of people's mouths. I too have been a witness to medical professionals insensitivity. I am so sorry. But like you said to trust your instincts. Ryley is thriving because of you and David. I am sure you have made all the best decisions for him to lead a healthy and happy life. Ryley is very lucky! :)

  3. Thanks for the comments x
    David's response when I told him was "So they thought he was going to die? When were they going to tell us?"
    Horrible to think about really.
    It is so hard having to balance what the medicos are saying with what you feel is best for your child. There has to be compromise I think-on both sides!! Our kids and us seem to be the ones doing all the compromising though!!
    It is sad that most people seem to have had a poor experience with doctors.

  4. When we got Eve's diagnosis, she was barely a month old, our daughter was visiting in hospital and having a cuddle. One of the nurses, without realising that she almost broke my heart, said, "What are you going to do about the other kids, I mean you wouldn't want them to get too attached to her" I thought well how the hell do you do that!! All we could see was that beautiful unconditionl love that was already there the moment they became sisters. I was so numb I just shrugged it off, she wasn't being mean at all but she just didn't even think. I learnt very quickly that you have to let those comments roll off like water off a ducks back, because they come more often than you ever thought possible. Go Ryley, thanks for proving them wrong!

  5. Oh my goodness Breanna! What an awful comment. Your're right, you do have to learn to not let it get to you, but sometimes there is that little comment that just seems to get under that incredibly thick skin! And I do think that most people say things without meaning anything by it, especially in the medical world which is so clinical.
    Just another thing we all have to deal with hey?!

  6. I totally get what you're saying - though hasten to add I have no experience in what it must be like to hear something so (while I'm sure meant to be positive) shocking. A punch to the solar plexus, I'm guessing.....

    Thoroughly agree with you WRT instincts!! Where would so many more of us be if we applied that rule to, well, every area of our lives?

  7. I'm afraid to say, i'm not at all surprised Anna.
    I think i've told you before of the Opthomologist once saying to me that he "wouldn't BOTHER making a referral for glasses because Elliott has a six month 'USE BY' DATE!! ....It's fair to say my skin (and heart) grew ten thousand layers that day.
    It's a struggle hearing such inconsiderate and 'off the cuff' remarks but it certainly makes us stronger and smarter.
    Keep doing what your doing, because it's clearly working.
    PS-hope to see you all on Sat (Woot!)..if i'm not riddled with sickness that is.

  8. K-Instincts are always right. I have trusted and followed them for years!!
    Liv- I don't think you have told me about that awful comment. That is terrible. And, yes hopefully we will see guys Sat. Am looking forward to it. I hope you are both well for it xox


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