Joy is getting an infusion today. She hasn’t gone to sleep yet, enjoying Little Bear! This morning, the therapy dogs were in the Jimmy Everest Center, as they have been before, but this morning we saw them as I was going to take Joy out of her wheelchair. I asked if they could bring the dog over while I held Joy on the floor. She can’t stretch her arms all the way out anymore so when she sees the dogs in her wheelchair she can’t really pet them. This morning, Targa laid right beside Joy and I. I moved her hand to pet and pet that sweet doggie. She smiled several times at the silky softness of Targa’s fur. She does like animals. Targa was loving it too. Her handler had to pull her away when we were ready to get Joy in her bed. That was a great moment. Also the JEC had gifts for Joy and Ethan that were donated by organizations to the center. I’m glad so many places think about the kids struggling with cancer at this time of year. That’s who most of the kids in the JEC are. We’re just blessed to be part of the JEC family.
To update on her gait trainer: We received it just before Thanksgiving, I believe. The timeline is a little foggy now. They fitted her to the gait trainer at TCC and then we delivered it directly to her school the next day. We can’t fit the gait trainer in the van if we have her wheelchair so I had to make a return trip the next day to deliver it to Joy’s school while she was at school in her wheelchair. It will stay at her school because she can’t really use it at home. Our house is mostly carpeted and she wouldn’t be able to move it. It’s better if a physical therapist helps her when she is in it anyway. For right now, she is just walking in it with the physical therapist once a week at school until everyone there can get comfortable with how it works and how she fits in it. We might be able to increase her opportunities when she gets back to school in January.
She is done with school for the year; today is her infusion, but tomorrow we leave for our Christmas trip. Our destination is eventually New York but I’m calling it the Christmas trip because we’ll spend a couple of days in Bowling Green with my parents, coming and going. We try to get to New York for Christmas every 4 years. It’s a good, long drive so we want to be there long enough to merit traveling there. We get to be with Ben’s mom for a week this year so that’s nice. He also has 4 other siblings in New York so we will spend some time all together with them. With just these 5 of the 9 siblings (and family friends), there will be 27 of us. The other 4 siblings add 26 more. And the 34th grandchild is on the way! It is craziness sometimes but lots of fun. I’m so thankful for not only my own family but my husband’s family as well.
The sore on Joy’s foot is still not healed. We don’t exactly know what’s happening with it. We were able to discern that it is not her brace itself that is causing the sore. Now, the scab is there and won’t heal completely but also isn’t getting any worse. The area puffs up at times, but doesn’t open. Within hours or overnight, the puffiness goes away. Please pray that we and nurses, therapists, etc have wisdom for how to resolve this sore. It doesn’t trouble her too much but it would be best if we could get it healed.
After checking some blood levels and a few being a little high, her epileptologist altered one of her seizure medicines. She has adjusted since the change and we haven’t seen too many negative signs. She has a few more tremors on some days but it’s hard to say if that has anything to do with the medicine change. She was bruising easily because the medicine was high and that has gotten better. Other than that, nothing much has changed. We continue to be thankful that she really has been stable for a good while now.
She is still loving school and using her switch there at times to respond in class. They are very good to work with her and all her equipment. She is happy to have her favorite Christmas toy back out, the 2015 Hallmark singing snowman. The fun thing for this year is that Ben was able to adapt 4 or 5 of her favorite toys so that when she pushes (kicks, hits, rolls on) a switch button they will play for her. This has provided some variety of entertainment for her in her bed. We don’t know that she intentionally pushes the button yet but as much as she moves, she hits it and as result, gets to hear the sounds. I’ll try to reinforce most of the hits. I can hear them from another room and realized she has hit the button, so I might come in or from another room say, “Good job, Joy, you hit the button.” If she is able and connects the cause/effect relationship, she may be able to hit them intentionally. We’ll see. If not, she gets a little variety by “accident”.
Ethan is doing well in kindergarten and we are actually ahead of the curriculum schedule. That made it nice when a few days through this holiday time, we were able to “cancel” school because we needed the time. He is trying to read everything--signs we pass, packages, etc. It is so neat! He knows most of the reading rules but now is confused by everything in English that doesn’t follow a rule. That’s a lot of our language. Thankfully, he has a good memory so all these sight words should be fine eventually.
I know many will be travelling soon. I pray that you each have safety as I’m sure you’d pray for us.
I also hope that you have time to contemplate the greatest gift of all: Our Savior!
Recently, I’ve been able to think about his coming to be a man and all that must have meant to him as God, to stoop to be bound in flesh. And it was all for us!
Our choir sang this song for our cantata, December 8. Let its truth dwell in your heart this season! Merry Christmas!
All You Are
There’s an infant child of promise
Safely held in Mary’s arms.
We have come to see and worship
The fulfillment of our hearts.
Oh, what wondrous depth of love
That our God would come so far.
Jesus, all we need is all You are.
The love that we have longed for,
The peace we’ve searched to find,
The hope that we have hungered for,
The joy that’s joy divine.
We bow before a manger,
Beneath a shining star,
Saying, Jesus, all we need is all You are.
There’s a hole the shape of heaven
Nothing here on earth can fill.
There’s an aching deep inside us.
We are restless until
We realize the reason for
The hollow in our hearts:
Jesus, all we need is all You are.
Chorus
At last our souls are satisfied.
Our deepest needs, Jesus, You provide.
Chorus