Onward & Upward
Sometimes it takes updating this blog to see progress. Like a growing child, the effect is lost in the day-to-day. Almost no noticeable change. You have to zoom out, take stock over the long haul, in months and years, to see change. I did that today looking back over the last 5 or so days since the last update. In the period of a day, Jennings seems the same. Taking in the full 5 days, there is definite progress. An amazing answer to prayer.
I almost used a vegetable garden analogy, but according to Lauren, I’m not qualified. Reflecting on my recent track record, it’s hard to argue.
Anyway, Jennings is still doing well from a transplant standpoint and is still struggling in all the same areas, albeit with improvement in each.
Last Wednesday, after the blog update, he had a long day in clinic and skipped nap as a result. That combo sapped him and he fell asleep at the dinner table. I thought he was just in a mood and had his head on the table to demonstrate his disagreement with sitting at the table even though he was not eating. Nope. He was full on passed out. Forehead on the table.
The next day, showing some signs of life, he asked to go to the Pyramid. Caroline and the twins were out for the day, so Lauren and I jumped at the chance to take him. Saying yes to him right now is such a joy. His mission, besides the usual looking at fish & toys, was scoping out the bowling alley for his siblings. Yes, the Bass Pro Shops in a pyramid has its own bowling alley…in addition to two full service restaurants and a, wait for it, wilderness themed hotel. He managed to bowl for 30 minutes and then in another positive sign, asked if we could have a family night. Again, that’s nothing major or out of the ordinary, but that’s just it - it is ordinary and it is coming to his mind in the form of desire.
Family night is code for homemade nachos and a movie. That night, we subbed in two rerun episodes of Lego Masters for the movie. Jennings nibbled on a few chips, but his methodical pace, trying to go gently with his stomach and swallow with a tube in the way, was no match for his siblings. They go after a cookie sheet of chips covered in cheese like a bunch of hyenas, leaving only crumbs and anything that might be remotely healthy in their wake.
On Friday, we let the bigs choose their own outing. They could pick something for the four of us, or divide up, boys & girls. Jennings bit on the split up idea, showing that although he’s making progress, he still has a ways to go. Here they are at their respective choices:
You know where J is. We got through most of the holes, then he only wanted to putt once per hole for the last few. When we finished he said, “That was tiwing!” The one hit per hole was a good calculation as he left just enough in the tank for a few arcade games.
Caroline and mommy went to the Civil Rights Museum, which is worth a trip to Memphis.
Good Friday night was family night, part two. This time it was game night and it went surprisingly well. The meltdowns were kept to single digits. Impressive, considering I had several.
We spent Saturday getting ready for Sunday and all the Easter fun. The kids, Jennings included, did a couple Easter crafts outside on the beautiful spring day, then we all colored real Easter eggs. After two family nights in a row and a day of crafts, everyone cashed in their rainchecks on those game night meltdowns. We had had a good run.
Sensing the pressure rising inside the house, we dragged everyone out into the cool sunshine for a walk to the local Mud Island market, Cordelia’s. We got five popsicles and a box of Lucky Charms. Yeah, so?
Top left: Headbandz…the 3-year-olds think they’re playing since they have a band on. Top right: Easter crafts. Bottom: Cordelia’s popsicle break.
We’ve obviously been a bit more lax on all the post-transplant restrictions this time around. Part of it is that it’s not our first time. Part of it is we recognize he needs to live and experience today, not wait for a time when everything feels ok. Part of it is COVID, which sounds counterintuitive but everyone else is so much more careful that he is much more protected out in a post-COVID world than he was in a pre-COVID one. In that spirit, we took the big kids to church on Easter morning with the help of Emily who came in early Sunday to watch the twins. It was so so good to worship the risen Lord in person with a body of believers. It had been a while.
After that, the kids had a super exciting & spoiled Easter courtesy of our amazing Charlotte community (thank you all ❤️). They each had eggs to hunt, bags of gifts to open, and baskets of candy to rifle through. It was: very nice, great success. Sorry, when the movie quotes hit, you have to capitalize.
I missed one of the best parts and L pointed it out later. I just didn’t notice. When we turned them loose for the egg hunt, J ran.
We ended the weekend with a picnic down at the river. The sunset was incredible and the twins were a picture of childhood…running wild & free, blowing dandelions, playing hide & seek among the river oaks. Charlotte stopped to count close enough to us that we could hear. “Six, seven, eight, nine, bourteen, thixteen, august, september.”
Jennings had a few appointments today, has a couple tomorrow, but Wednesday is another big day. He will have his first post-transplant bone marrow aspirate. It is transplant protocol to do a marrow at around Day +30, so Jennings is getting it in a couple days early. We fully expect him to be MRD negative, but there are never any guarantees so please pray for that with us. As evidenced by this update, your prayers are effective and we are so thankful for them.
As I write this blog post, Jennings is downstairs with Caroline in “her” room. He chose to have quiet time with sissy rather than nap…something they did almost every day before 11/25/2020.
Happy Easter sunset from Mud Island. Hard to deny there is a creator God in the face of that.
“O Lord, our Lord, how majestic is your name in all the earth! You have set your glory above the heavens. Out of the mouth of babies and infants, you have established strength because of your foes, to still the enemy and the avenger. When I look at your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, and the son of man that you care for him?” Ps 8:1-4
#allinforjennings