Philip is doing okay. It’s obvious the progression continues. For the last week he has been more agitated, higher heart rate, more tremor, more little seizures, etc. The doctor talked to us at the end of last week about starting him on a new medication and we agreed it was time. This is another step in just keeping him comfortable. It’s a medicine intended to do overall neurological calming. The doctor used the term “neuro-storming.” Though this is typically used for a traumatic brain injury, some of the instances can apply to Philip because of the neurodegenerative activity of NCL. Essentially, he has a brain injury though not sudden. He is not to a complete point of neuro-storming but many signs are present for it. Thus, this new medicine will slow his brain down so that this neurological activity will not cause him so much discomfort. He started it yesterday and although I haven’t been there today, my friend who was visiting him said that he was asleep and very calm.
Joyanna is getting her infusion and has slept most of the time. We’ll see what this week holds for her. She did okay last week but didn’t continue gaining as we have seen her over the last couple of months. Her arms and hands are very tight and hard to move and she wants to roll into a ball. All of these point to increase in muscle tone. We’re not sure why that increase suddenly now. One day at a time. That’s all we can do.
Our Missions Conference starts at church tonight. Ben will stay home with Joyanna and Ethan and I’ll go to church for the beginning service. We always get excited about Missions Conference. This year, Ethan understands more about missions so it has been fun praying for the missionaries and explaining all that will go on. There will be services tomorrow and Friday. Then Sunday will be our big Missions Sunday. Missions is the center of God’s heart. He wants all the nations to know about what Christ did on the cross to forgive every person’s sins. The only way they can know is if someone will go and tell them.
Here’s the song, “Master of the Wind”
My boat of life sails on a troubled sea
Whenever there's a wind in my sail.
But I have a friend who watches over me
When the breeze turns into a gale.
CHORUS
I know the Master of the wind.
I know the Maker of the rain.
He can calm a storm, make the sun shine again.
I know the Master of the wind.
Sometimes I soar like an eagle through the sky
Above the peaks my soul can be found.
An unexpected storm may drive me from the heights
Brings me low, but never brings me down.
CHORUS
He can calm a storm, make the sun shine again
I know the Master of the wind.