We have experienced some calm for the last several weeks. We are thankful. Joyanna is currently on the second week of a fall break. This means that I have been at home more lately which is part of the calm. Not rushing around every day allows a sense of calm to pervade. I have tackled projects that are always abundant at home. We have been able to make it to church each time and have enjoyed fellowship with friends at our home. I think Joyanna will be ready to go back to school but she has also seemed to enjoy her time at home. She is doing much the same as the last few months; still struggling to stretch her muscles out. She wants to be rolled into a ball all the time. She wears 3 different braces now to try to stretch some areas but it will probably be a constant struggle from here on out.
Today:
As you can see, I never finished what I started writing two weeks ago. We have continued to experience mostly calm though we can see that the season of viruses is upon us. Right after the last infusion I came down with a cold. Then yesterday, Ethan started running a temperature which has continued into today. Joyanna gets her flu shot today so hopefully we can avoid that. She is getting her infusion and has been so sleepy she barely woke up as I dressed her and moved her to van to wheelchair to the bed here at the hospital. The nurse continues to check her temp and it’s okay. Only time will tell.
Since her return to school, there have been no emergencies but things have picked up in the schedule. She has been to 2 doctors for follow up checks.
With the physiatrist, we have put into motion the process to have her serial casted. This is a progression of castings that will move her feet back into a normal angle. As the muscles tighten, her feet drop down into a toe point. They are also twisting inward. If we don’t work to correct this, eventually she will have so much tightness that those muscles could begin to continually cramp. We didn’t address this with Philip because we felt he wouldn’t ever reach that cramping point. Because he passed away on the earlier end of the life expectancy, we were right. However, we don’t know what God has for our Joyanna in the timeline of her life. Even though the infusions have helped her maintain some cognitive function, her muscles have continued to follow normal progression of the disease, mainly because of disuse. We want to take the precautions we should to avoid the cramping from tighter muscles. Each week she will be casted just like with a break but they will move her foot more each week toward a neutral position. It takes some time so they don’t injure the area. At the end of the time, she will have new braces for her (hopefully) flexible position and she will need to wear them daily to avoid tightening again. The process takes 6-7 weeks. We’re not sure how Joyanna will react to having both ankles casted. She kicks a lot. We’re not sure if because they are heavier, she will kick less or if we’ll have lethal weapons flying around our heads. In the last 3 weeks she has kicked me in the eye and in the chin while trying to change, dress or reposition her. I’d rather not have a hard cast hit anywhere on my head. We’re also thinking about how to improvise some padding around her bed so kicking does not do damage. Maybe weighted legs will make her muscles stronger so she can avoid the atrophy and tightening a little more. Who knows? We just know this is a step we feel confident we should take.
We also visited the epileptologist last week. She is pleased with how Joyanna has maintained over the last year. Joyanna was very alert when we were there—chatting and smiling. When we recently took a picture for our church directory, Joyanna had small myoclonic-type seizures every time the flash went off. That does not happen with dimmer light flashing but such a significant flash did cause the seizures. We have felt a few off and on when holding Joyanna, essentially just twitching. Sometimes they are actually not categorized as seizures. It’s impossible to tell by outer appearances. She has a tremor at times and the involuntary movements that may or may not be chorea. Because of all these things, we increased one of her medicines that covers a lot of the symptoms. It may also help with her muscle tightness and is an effective sedative. She takes an increased dose at bedtime. We think this was a good step in maintaining many neuro-muscular objectives. She has responded well to the increase.
My parents are in town this week. My dad was preaching in Texas over the weekend and will return to Texas to preach in another church this next weekend. They decided to spend the week here in OKC with us and my sister and her family. We are always delighted when they can come. I told my mom this morning that there have been a few times when they have been in town at the perfect time. God knows! With Ethan sick today and the infusion, it’s just ideal to have Granny to take care of Ethan at home. Thank you, Lord!
They will get to go out with us to the cemetery to see the new bench placed at Philip’s grave. A little while after the funeral, we went out to choose the memorial plate in the ground and the marker. We chose a section of plots at the cemetery where they do not allow headstones. However, they do allow granite benches. We liked this idea immediately. They engrave the last name on the bench just like a headstone. It goes in the right of way between the rows of plots and not on the plot itself. We chose to have the bench positioned between the two plots we have purchased for the children and engrave a little boy praying on the right side. I have included a picture below. We were surprised at how quickly they were able to create, proof and place the bench. Though we love flowers, we decided not to keep flowers at the grave, instead opting to purchase pinwheels to leave there. They are perfect! My sister and her family were able to find the three larger ones with bright colors. The cemetery is in a windy place (Oklahoma 😊) so those pinwheels are constantly spinning. I like to think of that at times. It makes me smile to think of those continually spinning even when we’re not there. It’s such a perfect memorial for Philip. They will not place the memorial plate for a while. We chose a simple design but decided to have a bus engraved on that and the words “As for God, His Way is Perfect…” Psalm 18:30.
Several people have asked us in the last few weeks if we are doing okay, really okay? We are. I'm amazed at the progression of how the Lord has changed our frame of reference to where we are okay, truly okay. There's so much peace and even joy.
There have been some lessons learned in these last few months. The Lord was so close during Philip’s passing. We got back into a home routine after everyone left. After a time, I experienced what folks talk about when right after a close time with the Lord, you find yourself in a desert place. It’s easy to let your guard down. When that happens, it doesn’t take our hearts long to go astray. I realized there was something missing, asked the Lord to show me and He did. After taking care of it, the fellowship was restored. It was very eye-opening. As we journey along in life, we learn the lessons that many have learned before us. It makes you understand why the author of Hebrews talked about a great cloud of witnesses—those who have walked this way before. The Lord continues to direct our path. Also as we go along, I hope to be more sensitive to knowing when the Lord is directing circumstances and allow him to direct my attitudes toward them as well. I have seen this several times in the last few weeks. Praise the Lord for his continued work in our hearts!
Here’s the song reflecting that thought. It’s simple but correct!
He's Still Working on Me
He's still working on me
To make me what I need to be
It took him just a week to make the moon and stars
The sun and the earth and Jupiter and Mars
How loving and patient He must be
'Cause He's still workin' on me
There really ought to be a sign upon my heart
Don't judge him yet, there's an unfinished part
But I'll be better just according to His plan
Fashioned by the Master's loving hands
In the mirror of His word
Reflections that I see
Makes me wonder why He never gave up on me
But He loves me as I am and helps me when I pray
Remember He's the potter, I'm the clay