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

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

    ReplyDelete

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