One year today
It seems like an eternity.
It seems like it was yesterday.
How can the one event that changed Ryley's life be the cause of such a contradiction?
The Ketogenic Diet is something I haven't written specifically about yet, and I don't plan to do it in this post.
Those close to us will know that starting this diet was the last resort for Ryley. There were no more medications to try.
We had tried them all.
We were hedging all our bets on the diet working. But at the same time we didn't dare believe that it would.
A 50% reduction in seizures? We prayed that this would be our outcome. 50% of 400 is only 200 right? We would have been happy with this. It would have meant at least some relief for Ryley from the constant seizures plaguing his tiny little body.
We hoped for a miracle. Held our breaths as we wished and wished and wished.
And it worked.
Better than we could ever have hoped.
No, we don't have full seizure control. But on a good day, we have a 95% reduction in seizures. That roughly equates to 20-30. And he only has them when he is really tired, usually at the end of the day.
He is now walking.
His weight has increased and he is now 14kgs! Which is a weight gain of nearly 4kgs! This is a massive weight gain for a kid with WHS!
The diet itself is really hard work and before Ryley had everything through the PEG we were measuring and weighing food. We are still measuring and weighing, but it is only formula, so it is pretty hard to get it wrong.
We don't know how long Ryley will stay on the diet. We still have lots of room to improve it for him. So one day he may be seizure free. We don't expect him to be ever seizure free, but it is truly amazing to see how far he has come.
So while the past year has gone quickly in some ways, in other ways it hasn't. What I have left out have been the terrible infections he has had (some very serious), the struggles with his health, and the stress of managing the health of someone whose whole body system has changed. There are very few health professionals who know much about the Ketogenic Diet. In fact there are basically none in Ballarat. Sometime half the battle is advocating, educating and explaining. But we won't ever stop doing that.
Here's to another year. One that is filled with so much hope. Sky's the limit really.
It seems like it was yesterday.
How can the one event that changed Ryley's life be the cause of such a contradiction?
The Ketogenic Diet is something I haven't written specifically about yet, and I don't plan to do it in this post.
Those close to us will know that starting this diet was the last resort for Ryley. There were no more medications to try.
We had tried them all.
We were hedging all our bets on the diet working. But at the same time we didn't dare believe that it would.
A 50% reduction in seizures? We prayed that this would be our outcome. 50% of 400 is only 200 right? We would have been happy with this. It would have meant at least some relief for Ryley from the constant seizures plaguing his tiny little body.
We hoped for a miracle. Held our breaths as we wished and wished and wished.
And it worked.
Better than we could ever have hoped.
No, we don't have full seizure control. But on a good day, we have a 95% reduction in seizures. That roughly equates to 20-30. And he only has them when he is really tired, usually at the end of the day.
He is now walking.
His weight has increased and he is now 14kgs! Which is a weight gain of nearly 4kgs! This is a massive weight gain for a kid with WHS!
The diet itself is really hard work and before Ryley had everything through the PEG we were measuring and weighing food. We are still measuring and weighing, but it is only formula, so it is pretty hard to get it wrong.
We don't know how long Ryley will stay on the diet. We still have lots of room to improve it for him. So one day he may be seizure free. We don't expect him to be ever seizure free, but it is truly amazing to see how far he has come.
So while the past year has gone quickly in some ways, in other ways it hasn't. What I have left out have been the terrible infections he has had (some very serious), the struggles with his health, and the stress of managing the health of someone whose whole body system has changed. There are very few health professionals who know much about the Ketogenic Diet. In fact there are basically none in Ballarat. Sometime half the battle is advocating, educating and explaining. But we won't ever stop doing that.
Here's to another year. One that is filled with so much hope. Sky's the limit really.
It is wonderful to see you all filled with so much hope for the future. Ryley truly is a wonder boy and who knows what he can achieve? He has achieved so much already. We are so proud of him and his mum and dad and litle brother! xxxx oooo
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