Joyanna is doing better. Hooray!!! We have now decreased her medicine 2 ml total, one in the morning one in the evening. Saturday we can drop another milliliter from the morning. So far, her behavior is better and I don’t see many changes in seizures. She has had a bit more trouble with balance, falling down more often but that could be just changing the medicine in general that would cause that. I am so thankful that at least we’ve gotten this far down in the decrease with no seizure changes. She is able to talk so much more and sing more than she’s ever been able to. This last week she has been singing almost full songs at times. I didn’t realize she has some of her favorite videos (Little Bear) practically memorized. She’s now saying some of their lines before they say them. Wow! Her attention span is better and we notice a difference in her reactions to us most of the time. Last Thursday, after we had decreased just the first milliliter for a few days, she was going through a doorway with Ethan at the same time and bumped into him. She responded immediately with, “Sorry, Ethan.” I knew we were on the right track then.
Philip is doing about the same. He still has lots of coughing spells but is managing them without gagging or choking. That is a blessing! When I stop to look at him or listen to his coughing, Ethan now says, “Okay, Philip?” It is so cute! Joy will come up and wipe his mouth with the towel that is always with him now. He’s got a pretty good brother and sister. Don’t let that completely fool you though. There just as apt to sit on his head at times as give him a kiss. We raised his dose of the same medicine we are decreasing in Joyanna. It doesn’t affect him the same way now though. We are trying to stay on the front edge of controlling his tremors and raising that medicine has been working so far.
I’m not sure I’ve said it on here before but God’s Way is Perfect (our blog title) is based on the verse, Psalm 18:30. “As for God, his way is perfect: the word of the LORD is tried: he is a buckler to all those that trust in him.” This was a verse I used for our wedding and then from early in our marriage, it just sort of became our family verse. It is always an encouragement to us. So, it was naturally a fit when we heard the song, “God’s Way is the Best Way,” to add that to our list of favorites. Maybe the words to this song will encourage you as they have me many, many times over the last few years.
God’s Way is the Best Way
All things work together on my way
To make me more like Jesus everyday.
Though trials come and go,
He's molding me I know,
And with a calm assurance I can say.
Chrorus:
God's way is the best way
Though I cannot understand what lies ahead.
I know He's in control,
And He's watching o’er my soul.
For God's way is the best way.
It's the only way for me.
All things work together, yes, it's true,
Regardless of the trials you’re going through.
In times of doubt and fear
My Lord is still so near.
Have faith in Him; His perfect will He'll do.