"RYLEY! I said come inside!"

Uh-oh. Ryley is in trouble.
It is not often I hear David getting a bit cross with Ryley. But Ryley is very stubborn.
Tonight, he DOES NOT want to come in from outside thank you very much. He DOES NOT want to have a bath, and even though he is hungry, he DOES NOT want to have his PEG feed.
No, he wants to play on his slide all night.
I can't help but smile. This time last year, I would never have dreamed that he would be enjoying playing by himself so much that he doesn't want to stop.
And have a look at him squishing his little brother. Braeden seems to be loving it don't you think? Or, possibly not!
One of the nice things about Ryley having less seizures is the fact that his personality is well and truly shining through. He has such a wonderful sense of humour, he is cheeky, loves to annoy his brother and wrestle with him, and he has finally found things he can do without an adult to help him.
Seizures are so debilitating. I read in an article the other day that there are some seizure meds that actually make things like balance worse. So, sure, they may decrease the seizures, but they also cause other issues like headaches, problems with concentration, fine motor and gross motor coordination difficulties and memory problems.
I guess for Ryley, being on the Ketogenic Diet means that he doesn't have very high levels of medication in his system now. But I do wonder if some of his issues would disappear if we weaned him off the meds and relied on the Keto Diet alone? I wonder if we are brave enough to give that a go? Would our neuro team even let us?

You know what? I am actually counting down to holidays. Can you believe it? Yes, it is the same me posting. Maybe it is because we are going away for one of the weeks and I CAN'T WAIT!

PS. Thanks to those who become fans of the FB page! Lovely to have some new readers too! So to those ones, WELCOME!! It is lovely to have you.

Comments

  1. HannahMarch 18, 2010 at 12:22 AM

    It's so exciting to see how far Ryley has come. It gives me great hope for the future with our Riley.

    ReplyDelete
  2. BarbaraMarch 18, 2010 at 7:52 PM

    Ha ha! Good on Ryley. It is wonderful to know he is so independent. Not so easy for his parents though....

    ReplyDelete

Post a Comment

Agree? Disagree? Love to hear your thoughts! Thanks for stopping by!

Popular posts from this blog

Some things just never get easier

I have logged back in to write today as we come to the end of lockdown 3.0. I just saw in my unpublished posts my thoughts about lockdown 1.0. Hmmm. I might publish that one day!  Today's topic feels like something I have written about before. Over the past few weeks, Ryley has been undergoing assessments. These assessments are necessary in order for us to receive adequate funding under the NDIS.  Long story short, Ryley's last NDIS plan has failed to provide the funding he needs in order to participate fully in the things we had planned for his transition out of school.  The whole process has felt a bit messy.  It started with me not being listened to. This is despite my strong, knowledgeable-of-systems-and guidelines voice. No blaming or shaming here. It just is as it is.  However, for those that know me well, know that when you try and 'quieten' my voice, I will only speak louder. Especially when it comes to advocating and speaking for those that can't. ...
Keep reading

Blogging 101-how do I do this again?

Image
Sometimes I wander back into this blog and check out a few of my past posts. I read some of the wonderful blogs I used to follow regularly and contemplate writing here again.  So many things have changed in my life over the past few years.  The teenage years are...difficult.  I feel very alone in this raising a teenage boy with WHS thing. There is no one really to answer my questions, and I spend most of my days feeling as though my son hates me. I know he doesn't, but this is tough. Way tougher than I thought it would be.  So here I am.  Tracking my journey again. It may help others.  It may help me. But I feel as though there is so little support out there for parents who have teenagers with WHS...or any other disability for that matter.  I feel compelled to write. So, I will eventually update this blog so it looks a bit fancier and with the times again (ha!). But this is me. Raw. Unedited. Changed. ...
Keep reading

Is being strong, enough? Part 1

Image
      I am currently reading a book called 'Strong Mothers, Strong Sons', which is written by Meg Meeker. This is the beginning of my journey towards understanding what I could be doing better when it comes to supporting Ryley with the teenage years (this should benefit Braeden too!).Of course there is nothing in this book so far that relates to teenagers with complex disabilities ie. if they can't talk. However, I do feel as though there is some useful content. My plan is to start sharing my findings, and hopefully, start the process of developing some practical guides for parents of teens with a disability.       One thing I have been reminded of, is how easy it is for a mother to cause pain in her son's heart. While she (or I, such is the case), is busy focusing on how she is feeling about her son's behaviour , her son is slowly backing away because he doesn't feel as though she cares. I get this. It is so easy to make a young person's behaviour per...
Keep reading