Yes, Joyanna is off school, for another unofficial spring break. This one might stretch out for a while. As you may have heard, many Oklahoma teachers are participating in a walkout to draw attention to a lack of education funding, which includes salaries and resource funding for the schools.
Joyanna is doing well. She is definitely more alert and awake in the morning after our change in medication times. I have worked it out to almost a subconscious event for which I mostly don’t wake up. I draw up the medicines the night before (don’t want to mess that up in a bleary-eyed state) and leave them on the counter. At 4am, I grab them and don’t even turn any lights on (her feeding pump gives off a dim glow that I can see by). Most of the time now, I don’t even wake up Joyanna. WooHoo! It has helped her, so I think we’ll continue as long as we feel we should. She doesn’t take a nap most days and is usually tired by bedtime; she's been sleeping better over night for the most part. She is napping today while receiving her infusion and it has gone well. This morning, she was extra chipper; Ethan had her giggling while I was getting the kids ready. Then she wanted to sit all the way up in her wheelchair as we were coming in. She sat up in the bed for a long time, too—watching clips from Finding Nemo and Finding Dory.
I was able to make it over to see Philip a few more times than normal in the spring break time. He’s doing okay. They raised three medications last week because he can’t seem to really get into a groove where he seems comfortable. Personally, I think the progression is obviously moving more quickly. It seems when we do these medication raises, we may get a few days of calm but then he is agitated again. Half of the times that I have been in, he just doesn’t seem comfortable with all the neurological movements keeping him going. We have assured the doctor we are fine with an aggressive outlook on medicine raises. We want him to be comfortable. Really now, I am just praying that God would take him home. When I see him uncomfortable half the time, I just want him to be free. I know in heaven, he will be in the best hands possible and also be perfect and whole and happy. I know that the Lord knows the right timing and I trust Him with when, but I am asking Him to carry him home. I know until that time He will continue to carry him here. It will be okay; pray for grace and strength for Philip and for us as we navigate these unknown waters.
I’m reminded of the lines of a song that I have posted on here before, “The Perfect Wisdom”.
It says,
“Each strand of sorrow has a place
Within this tapestry of Grace.
So, through the trials I’ll choose to say,
“Your Perfect Will in Your Perfect Way””
Amen.