I have so many little matters to tell you of, that I cannot wait any longer before I begin to put them down.
Jul 3rd, 2024 by ECM
Annie learned to walk with a reverse walker back when she was three, and now she’s back at it with a bigger one, walking all around the building with one during her PT sessions! Today her PT Marley picked her up with the reverse walker, so she didn’t even ride into the therapy gym on her prone cart. The goal is to get lots of muscle memory of correct gait patterns and to increase her stamina so that she can walk more and more each day.
Jul 2nd, 2024 by ECM
I realized that while I showed the two incredibly uncomfortable options for parents sleeping here (way too short and hard loveseat, longer but very narrow and hard bench), I haven’t yet shown the solution. Here are my sleeping quarters. Every night at 8, when Annie gets her vitals taken, I push the loveseat over to her bed and let down the Ikea foam mattress that Hannah lent me. I added our old featherbed mattress topper from home, so it’s not my mattress at home, but it’s a big step up from the other options here! With the loveseat in between Annie and me, she’s less likely to stay up looking at me and trying to talk to me for hours like she does to Janie back home. The worst aspect of it all, of course, is crawling down in and out of bed, and whenever Annie wakes up and decides she needs to try to use the potty, I have to decide if I’m going to clamber up and take care of it or if we ring for the nurse who may or may not come in time but probably will turn on the lights and fully wake us up.
Jun 30th, 2024 by ECM
Today we were late for church not because Derek and the kids didn’t make it here in time, but because the doctor hadn’t put a note into Annie’s file that she was good to leave the hospital without him having eyes on her first. He doesn’t come in to work until 9, and church starts at 9, so eventually we were all sitting there by the desk, waiting for him to come and sign off, knowing we were going to be late, until the nurse took pity on us at 8:55 and said we could just go. Why she couldn’t have said so 25 minutes earlier remains a mystery. And then in the evening, the same nurse allowed the kitchen staff to take Annie’s dinner tray while we were down seeing the family off, before she had eaten any of her dinner! Sigh. Our favorite day nurse, Danielle, is back tomorrow, to our relief.
At least the big kids got to see Annie standing and read her some books while we were hanging in the room.
Even though Derek and the teens were all exhausted from a busy week (and lots of driving), we headed to the Museum of Science and Industry for the afternoon, where at least Janie and Annie were excited to be back after our trip there with friends in January! This used to be Tommy’s favorite hangout when we lived here, but his memories of 16 years ago (or even our last visit in 2017) are basically nonexistent. (This type of realization leads me to wonder if it was actually worth lugging a toddler and baby out of the house all those times when I could have just stayed home, but I reflected that *I* love this museum, and often I went with a friend and filled my extroverted soul with needed grown-up time, so it wasn’t a waste, even if it made apparently no lasting impression on the kids.) I took some photographic evidence of our visit so that we can confirm to the kids that we were indeed there!
Jun 29th, 2024 by ECM
Today was a mercifully good day here. I’ve been homesick and lonely, and despite a couple good phone dates and some quick but wonderful drop-ins from Hannah, it’s been extra hard to wait to see Derek and the big kids again tomorrow! But today God was good.
I had a coffee date with my friend Amy, our pastor’s wife here, and a mentor to me in my early years of parenting. It was so fun to catch on the last 14 years of each other’s lives and hear about the progress of Holy Trinity, catch up on each other’s kids (theirs are all grown now!), and talk books and parenting. I did a great pilates reformer class at the studio across the street, which was really good for my sore back. Annie’s little buddy Alex got to go home today, which is a little sad for her because even though she doesn’t know Spanish and he doesn’t know English, they liked hanging out together at the nurse’s station, but it’s so hopeful to know that kids do get to leave her eventually. And I had a long, lovely phone date with Elysia, talking books, homeschooling, and all the kindred spirity things. Then Adom, the girl from church who brought me a (yummy) dinner tonight, is a Notre Dame grad, so even though we were meeting for the first time, we chatted for a few minutes about South Bend and Chicago and the similarities and differences and the dear, healthy church here that we’ve both been part of. I finished Sam Allberry’s excellent What God Has to Say about Our Bodies, and I highly recommend it to everyone. The last chapter has your heart racing in excitement to be with the Lord!
And Derek and the kids are coming in tomorrow! I can’t express how much Annie and I miss them all. I love being with my family, and while this is technically a vacation from cooking and cleaning and chauffeuring around, it’s more fun to get to have a break with more of the people I love best, not just Annie.
Last thing to be grateful for is that Annie stood by herself again today–this time, for almost 30 seconds without holding on to anything! It’s been a long three weeks, but we are truly making progress.
Annie got the go-ahead to stand up outside of therapy today! Now, she should be wearing her braces for longer periods of time, but this was a quick stand after her shower tonight. It’s the first time I have seen her stand unassisted by a grown-up in three weeks.
We’re still looking at a discharge from inpatient therapy on July 12 and sticking around for outpatient day therapy for another couple weeks after that!
Jun 26th, 2024 by ECM
One of the big benefits of being right here at Shirley Ryan is that the therapists and orthotist (who does her braces) work seamlessly together. Yesterday, Annie had a few red spots on her feet after walking for a few minutes in therapy, so the therapist took pictures and let Helenlyn know asap.
Helenlyn came and worked on them this morning, then Annie had the smoothed out braces in time for this past PT session. She actually walked with the walker the WHOLE hour, so she looks like she’s developing a bruise or blood blister right at the edge of one of the anterior leg shells. We already got it documented and sent off to Helenlyn for more adjustments.
In the meantime, Annie’s phonics lessons are progressing well. She’s so eager to read that she wants to skip ahead past the lessons on what sounds each letter makes, so we’re flipping ahead to sound out short letter words. And she wants to turn around and write them!
Annie and I have both hit a brick wall with the food options here, but I got another delicious meal delivery from a HTC member!
Still weary, but life is brighter with better food in our tummies!
Jun 24th, 2024 by ECM
We’ve found that the promise of watching two Daniel Tiger episodes on my laptop after completing a meal generally works as a strong incentive. Annie has been eating much more since Mommy gave in to bribery. I’ll worry about the detox from 6 episodes of Daniel a day when we’re back home, with decent food…
Jun 23rd, 2024 by ECM
The sad news: This was the Sunday that Derek and the kids couldn’t come in to see us, so we’re both feeling a little more homesick today than usual.
The good news: Annie slept through the night last night without any potty breaks! Thank you, Jesus. Yesterday, I was pretty much a basket case of exhaustion, and it’s amazing what a full night of sleep does to ones’ sense of equilibrium. Also, my back is feeling so much better that when Annie did wake up at 5:45, I carried her into the bathroom myself. Also, the temperatures broke, so instead of the hot and humid 90s of the past week, it was only the humid 70s for our half hour walk down to church. Now, it was so humid that I was literally dripping sweat by the time we got to HTC, but it felt so much worse for our quick walk yesterday afternoon, when we got out to the park on Navy Pier, sat for a couple minutes, then came back inside to cool off. We saw some friendly faces at church, so it was worth the walk and not just streaming from our room.
Since HTC is only a couple blocks from the Art Institute, we headed in there for an hour before walking home. Annie wasn’t in the mood to stop and look at paintings much, so we quickly ended up in the kids’ activity room of the modern wing, doing some watercolors.
Then we strolled through Millennium Park on our way back to the hospital.
Jun 22nd, 2024 by ECM
Annie woke up to use the potty SEVEN times between 11 pm and 6 am. I don’t know what is going on. Her nurse, Emily, was infinitely more patient than the other Emily in the room during each of those almost-hourly checks. Then while eating her breakfast, she announced that she had to go again. She hadn’t had anything to drink in 12 hours, so I told her to finish her bagel and got her dressed for PT. Marley brought her back from PT after 5 minutes, saying that Annie claimed to need a new pull-up. And it was wet. Sigh.
Obviously we have switched her totally to pull-ups now after I cut off a pair of soiled undies yesterday afternoon, and I’ll be talking to the nurse practitioner today about getting her tested for a UTI or anything else that could be causing this. I just want to curl up on a real bed and get six hours of sleep. We were going to head up to Evanston this afternoon to hear Hannah sing Bach. That is not going to happen. I just need to hold it together and not burst into tears of fatigue today.
Jun 21st, 2024 by ECM
Was I super proud of myself for cutting up the two egg whites from Annie’s rejected hard-boiled eggs from lunch and hiding them in her dinner spaghetti while she was in her late therapy session? Yes, yes I was. Was I a little bummed when I realized that I had only added 34 calories and 8 grams of protein to her meal? Yes, yes I was.
At least she ate it all up, which is quite rare with the mediocre cuisine served in the Shirley Ryan cafeteria. Does this smile overcome a lot of my frustration on the eating front? Yes, yes it does.
