I realized that I should post an update for non-family members who might still be checking in on Annie. Our pediatrician is a rockstar and straightened everything out, so we finally started daily PT with our home therapy center this week. We have it from 8:45-9:30 M-F and are working with Jeff and his colleague Lori. We’ve been happy with her progress now that she’s back in rehab, but we’re still working a lot on strengthening her core, her quads, and her glutes.
We’re still trying to do a lot of careful walking with the walker, side-stepping, sit-to-stands, walking on knees, and high kneeling play at home. It seems like a lot of time back and forth to therapy, and I’m not sure how we’re going to manage homeschooling with half our morning gone, but that’s four weeks away, and I am grateful that we at least have the flexibility to be home this month!
We are enjoying our time back home, and boy, enough stuff has been happening in the election law world this past week or two that Derek is definitely glad to be able to concentrate on work full-time now that I’m home. But the saga of Annie’s care is continuing to frustrate us. Today is her eleventh day with no professional rehab, and based on Dr Raskin’s protocol, she should still be inpatient, receiving 3-4 hours a day of therapy…
We heard late Friday afternoon that Shirley Ryan had finally gotten their act together to fax over a new referral to our PT provider here at Memorial Hospital. Obviously they didn’t have time to look at it before the weekend, so I called first thing this morning to make sure Memorial had the correct referral in hand. It was only for 2-3 times a week of therapy, so I spent the morning calling Dr. Raskin’s surgery nurse every ten minutes to try to get direct new orders from him. Before I got in touch, our PT office called back to say that we’re scheduled for an evaluation on Thursday morning, that they will schedule us for 5 days a week (because I made sure they had a copy of the post-surgery protocol) and that as soon as Jeff gets the plan written up, they’ll send it to our pediatrician, Dr Griffin, to sign off and submit to insurance. So…while it’s been eleven days without rehab, hopefully by the beginning of next week, we’ll be back to working with Jeff and Lori and Memorial Children’s Therapy and hopefully starting to correct some of the regression she’s been having.
Annie continues to be resistant to working on therapy exercises at home. She wants to play with dolls and listen to audiobooks and read with her siblings and maybe take walks, but try to get the girl to do a sit-to-stand or 20, and she really doesn’t want to. Prayer request is that she cooperates so that we can keep strengthening her muscles!
The good news is that I took her in to Dr Griffin this morning at 8 am to talk things over with her and have her take a look at Annie’s incision. I had so many nurses telling me so many different things that I just want to go by what our pediatrician tells us to do from here on out. We’re still a ways from being able to immerse it or swim, but she says that it’s healing well, albeit slowly. She signed a handicapped parking application for us, so we’ll have a tag for Annie for the next few months of walking with her walker. And she is as eager as I am to get Annie back in rehab, so she will have her eye out for the therapy paperwork and will be sure to sign it and get it back to them asap so that we can get going.
Thankful today for another wonderful pediatrician here in Indiana. I’m beyond frustrated with my inability to reach any of the doctors in Chicago to help us out the past week and a half, but Dr Griffin is on Annie’s team 100%. Thankful for Susie’s good health report today–I was back to see Dr Griffin this afternoon for Susie’s annual well check (she’s on an earlier schedule for all that than the rest of the kids because of needing to get in early for ENT referrals last year), and Susie has broken the 5 foot mark by 1/4 inch (woo hoo!) and is in perfect health besides her hearing aid and glasses. Thankful that the rest of the kids are happy and healthy! Thankful to be back at Redeemer yesterday, where Pastor Brian’s sermon on the tongue was very applicable to our family at this time (ahem). Thankful that I got to make it to my foster/adoptive moms monthly support group last week, since I was home, and that someone had donated a bunch of cereal for adoptive families, so I walked out with four boxes of cereal that have been a blessing for breakfasts while we have no kitchen. Thankful for the good weather that has allowed us to walk Annie around the block to practice heel-toe, toes-face-forward steps.
Yesterday was a whirlwind. We woke up at RMH, hoping to get word about starting therapies, assuming we were there for at least another week and a half, hoping for clarity moving forward. By mid-morning, I was calling and leaving messages and trying to get in touch with the scheduler at Shirley Ryan outpatient rehab, and she finally called me back after lunch. She had just heard back from insurance that they are out of network with our insurance, and they should have checked on coverage before we had our evaluation appointment on Monday, but because outpatient therapy is available to us at home (unlike inpatient therapy, which was itself a hard sell for insurance), insurance had been rejecting things and being stupid. So we could probably pay a premium to stay and do it with them, but it wouldn’t start until next week at the earliest, and as I already knew, it would just be three times a week, because that’s all they’re allowed to schedule. We had apparently been staying in Chicago for no reason all week.
Fortunately, we were getting on a bus and in public, so I couldn’t start crying there. As Annie beamed at all the fellow bus passengers, I started to process that we needed to go home, that once we left Ronald McDonald House, we wouldn’t be able to get back in if I changed my mind, that driving back and forth two hours one way for an hour of PT and an hour of OT was not going to be worth it, that Annie had already been 6 days without therapy, and how was I going to check out of Ronald McDonald House with all of our stuff, her walker, the stroller, and all the little bags and totes of school supplies and get us home? I can’t believe I managed to focus enough to get us off at the correct stop.
We’d been on our way down to Millennium Park to meet Annie’s beloved cottage school teacher, Maddi, and her mom Kelsi, who runs our Charlotte Mason hybrid school. They had promised to come visit us in Chicago when they first heard about the surgery and had driven all the way in to do the Art Institute with us (only to find out as we all arrived that it is closed on Wednesdays!). So instead of our planned hang out in Chicago, I shared my realization that we needed to pack up and move home, and Kelsi pointed out that they were going to drive back to South Bend after visiting us, anyway, so why not just bring us home? We headed over to RMH with the usual Chicago adventures (have you really visited Chicago if you haven’t gotten turned around in one or more parking garages?), and Maddi and Kelsi played with Annie while I packed up our room and checked us out. And we drove home in time for dinner!
So I had been praying that the decision to stay or go would be really clear. God answered! And while Maddi had hoped to come visit while we were still inpatient, it was totally God’s timing for them to pick this Wednesday–I can’t even imagine the stress of trying to figure out how else we could have gotten home. I am so frustrated that we could have been home since Friday and started the process of getting PT going again here (even though they couldn’t give us 5 hours a day of therapy until the end of the month, anything would have been better than the nothing we’ve had since leaving inpatient!), but my mom reminded me that being in Chicago allowed me to focus just on Annie and not all the craziness of life back home.
Because chaos is the key word here. Many of my friends remember me joking about this summer and how we were getting our kitchen remodeled and wouldn’t it be the absolute worst timing if they got delayed and started working on our kitchen the exact day I got home from the hospital with Annie? Guess what started happening yesterday afternoon, right before we got home?
Yes, that would be our kitchen, completely gutted today! We have no kitchen sink or oven. God has a great sense of humor.
Another day without news from Shirley Ryan Outpatient. I assume our insurance is being difficult.
After feeling close to despair yesterday morning, I determined to work with Annie on home exercises as much as possible at RMH. And yesterday volunteers brought Pizzaria Uno for dinner, so we had a meal she was (mostly) willing to eat.
We’ve explored all the lounge areas of RMH and have tried to work on side steps, sit to stands, high kneels, and climbing stairs in between bribes of Curious George episodes (the hospital stay seems to have exhausted Annie’s interest in Daniel Tiger for the time being). I thought we’d surely hear something today, but I had to get us out of this building, so we walked over to the bus stop and took the bus down to Museum of Science and Industry to go watch chicks hatching. Annie was a BIG fan of riding sideways on the bus, though the loud traffic noises had her pretty concerned.
And there weren’t any hatching chicks today, so instead we wandered all over the museum (with her walker but no stroller) for a couple hours. She didn’t complain once about being tired of walking, probably because there are so many interactive screens to touch there. I’m not sure that she has a better understanding of anything science or industry-related now, but it was nice to get another use out of our family membership. I tried to be really strict about correcting her gait to avoid the swinging step, so I guess if I had nothing else to worry about and could devote 100% of my attention to her all the time, maybe she wouldn’t regress so much.
Annie said she had a great day, though she did tell me her favorite part was riding back and forth in the city bus, so I guess I could spend $2.50 to just ride around on one tomorrow for some cheap entertainment before we head over to the Art Institute.
It’s after work hours, so at this point, it feels like another wasted day sticking around here when Derek and the big kids need me so much at home. I’m going to give it one more day here, hoping to hear that we can come in immediately for rehab and make this time in Chicago worth it, but if we don’t get word from Shirley Ryan by tomorrow afternoon, I think Annie and I are going to take the South Shoreline train home and wait in South Bend to hear from the Shirley Ryan scheduler, and we could be back over here in two hours, if necessary. Every day that we don’t have therapy makes me so frustrated–the only reason we’re sticking around here rather than at home was that we were supposed to have smooth continuation of care. I guess being here without the distractions and responsibilities of home does make it easier to spend several hours a day focusing just on exercises with Annie… Sigh.
We were home for about 44 hours, then the whole family headed back to Chicago for church downtown, a weekend in Wheaton with our old ND Law/Kirkland friends, and then dropping Annie and me off at Ronald McDonald House for another week.
This is Annie right after waving off the family, happy to be spending the night with me here. This smile was before I realized at bedtime that I had forgotten everything out of her room–her blankie that she’s slept with every night since before she joined our family, her beloved Michael the Koala stuffie, and her Toniebox with all the audiobooks that we use instead of screens to keep our girl happy. There may have been some tears here, and they might not all have been Annie’s.
We had our intake evaluation appointment at Shirley Ryan outpatient rehab today. It’s not in the same building with the same therapists, but rather their old (and significantly shabbier) building up the street, and instead of smoothly transitioning to continue doing the therapies that we were doing with Marley and the other PTs at inpatient, we basically came in like new patients and didn’t actually do any therapy today. The OT noted that Annie’s pretty good and doesn’t need a ton of help with the typical OT things–she’s already dressing herself, etc. Maddie and her OTs in inpatient were mostly working on core strength to supplement her PT work, but we’re going to have to make up some goals to convince insurance to cover this. The PT said, “Well, she’s walking and climbing stairs better than I expected!” And I said yes, she’s walking with a walker and using the rail and someone’s hand to climb stairs, but our goal was for her to be strong walking and climbing without a walker or assistance. I mean, Dr Raskin said it was mandatory that she do therapy five days a week for the first six months after surgery, then three days a week after that, and these therapists are acting like it’s going to be hard to justify her seeing them three days a week for a couple weeks. Sigh. And her walking is already changing to swing around more like her old gait, which tells me that she’s already regressing since leaving inpatient rehab. She was “doing so well” after four weeks there, but there is clearly a reason that the surgeon recommends six weeks, and she clearly still needed 3-4 hours of rehab a day for longer. I’m trying to do all of Marley’s recommended home exercises with her, but she’s suddenly so resistant to working with me (and with Jessi, the new PT). It’s obvious that they released us from inpatient too early, and I am torn between screaming and weeping right now. If she ends up walking the same after the purgatory we’ve been putting everyone in the family through this summer, I swear I will give up on all medical interventions going forward.
Hopefully we’ll get insurance to approve the little service that we are receiving here so we know what our schedule will be for the next couple weeks…
Today Annie had her last four therapy sessions and graduated from inpatient rehab! They worked a lot on home life skills, like walking up and down stairs, navigating ramps with the walker, pushing the walker across (fake) grass, sit to stands, and standing without holding on to anything. Marley gave me a nice list of all the different PT exercises we can work on at home, so even if we have gaps in PT coverage, I should be able to keep Annie progressing.
Since we’re in our last week of rehab here at the inpatient clinic, I’ve been going back and observing more of the PT and OT sessions and taking pages of notes for the types of things we need to be working on at home.
Some things of note: Annie needs to be in her braces every single moment that she is standing or walking. We will be putting on her braces as soon as she gets out of bed and keeping them on all day. She needs to walk with her reverse walker pretty much at all times for the next 6 months, so we’ll be hauling it up and down the stairs and taking it to school and church and everything. The braces prevent her from walking incorrectly, and we need to keep them on so that her new neural pathways are set. The walker helps with stability so that she can focus on proper mechanics like heel-first stepping and lifting her feet. Again, we’ve got to lock these new, healthy gait patterns into her brain. We shouldn’t rush her, so if we’re in a hurry, better to pick her up and carry her than to have her rush and do something incorrectly. Time to get that handicap tag, I think.
After lots of discussions with insurance, many calls from our hard-working Dr Revivo and the care management team, and a lot of prayer, we have ironed out the rest of our time here. We are being discharged from inpatient therapy on Friday, as planned, then we’ll be starting day rehab on Monday. It’s not at this facility, but actually up the street. Since it’s new therapists, she’ll have to have a big three hour evaluation on Monday, then hopefully will be seen three hours a week for three hours for two more weeks before we transfer to our PT back home. I shadowed one of her PTs yesterday to get some tips on things to work on on our off days.
And in general, Annie is getting better with walking every day. We still need to work a lot on stairs, because she will have to do a lot of those at home, and her back is now reacting to the bandages we were putting on to cover the honey that we put on the incision to heal it, so I will still have a nasty, slowly healing incision to keep an eye on, but we’re not concerned about that long-term. One big improvement I have noticed since her surgery is how easy it is for her to put on her own AFO braces! Before, the extra tone from the brain damage and misfiring nerves made her extend her feet tightly all the time, like she was pointing her toes and couldn’t flex, so we had to force her legs to flex enough to get the braces on, tightly strap them while the heel was in its place, and then get the shoes on over the braces. She was not strong enough with her hands and arms to force her feet to flex, she couldn’t really put her own braces on and therefore couldn’t ever put her shoes on herself. One of us always had to help her. Now, she still needs a little help, but with normally functional feet, she is working with the OTs to be able to get on the braces and shoes. That’s a huge step forward in independence.
The good news: After getting calls every morning this week from Ronald McDonald House, telling me that there are no available rooms and no anticipated check-outs, I got a call out of the blue at 5 pm tonight, telling me they have a room for me tonight! I had sent our suitcase home with Derek during the stay, because there wasn’t really a spot to stash it at Shirley Ryan, so I quickly threw my clothes and toiletries into a tote bag and packed up some of my books to transfer over. I can move everything else over in stages. I am looking forward to being able to get dressed without a random tech or nurse or housekeeping person or food service person barging in at any stinking minute, day or night. (One night, someone felt that it was really important to come in and noisily change all of our trash cans at midnight, with Annie sleeping right there next to the trash can.)
If you haven’t been in a Ronald McDonald House, they are like a hotel/apartment building where everything you can think of is provided to relieve your stress. I had a care package waiting in my room with everything from hair ties and extra toothbrush to a mug, crayons, and a homemade quilt. Kitchen and community pantry supplies mean I’ll be able to cook for myself and Annie if we don’t want the three hot meals provided (or leftovers neatly packaged in a designated fridge) or the snacks donors have provided everywhere for families. We’re also on the same block as Whole Foods, if I want to grab some fresh produce. I almost cried tears of joy when the manager gave me the tour.
The bad news: Half an hour earlier, the case management lady had just come in to tell me that not only is our insurance fighting about even having us stay through next week (discharge date of July 12 would just be the bare minimum of 4 weeks, two weeks less than the standard recommended stay), but that due to blah blah insurance nonsense that I won’t go into, they might not even cover any outpatient here at all. Since what we get here is far, far superior to our PT option in South Bend (and because our home PT doesn’t even have room for us until the end of July, anyway), we had planned/hoped to finish out the 6 weeks of intensive post-operative rehab here, whether inpatient or outpatient. We were told repeatedly by every doctor and therapist before surgery that it’s absolutely essential to follow the recommended protocol of intensive rehab in order to see permanent benefits from this procedure. So I’ll be spending much of Monday on the phone with insurance and various doctors and rehab centers, trying to work out how and where we’ll be able to finish out Annie’s intensive rehab. What a wonderful birthday that will be…
But I’m not going to think about that until Monday. Annie only has one therapy tomorrow morning, so we’ll probably come back over here to RM House to hang out for the afternoon and evening. There’s a piano in one of the lounge areas, so I’m going to let her play to her heart’s content and probably only bring her back in time for bed!
We were feeling pretty down after the family left on Sunday, but on Wednesday afternoon, we ubered up to Eleanor’s for the afternoon, and Annie played with the girls while I got in my baby cuddles and added some books to my list and enjoyed adult conversation with Eleanor and ate yummy homemade food!
Then for the 4th, Mariel and Hazel drove over from Hillsdale and took an 8 hour pit stop in Chicago on their way out to South Dakota. We showed Hazel Annie’s room, and the girls realized that they both have read One Morning in Maine, Annie’s current obsession!
We made our way down to Millennium Park, stopping to check out a playground on the way down, showing Hazel the Big City sites, and hanging out in the children’s play garden in Millennium Park until we got too sweaty.
So we went in to the Art Institute to cool off and get some culture.
Then we picked up Chick-fil-a and headed over to have a picnic dinner while listening to the Grant Park Music Festival’s Independence Day concert!
It was a long and much-needed break from the same white walls and gray floors! I have said it before, but I’ll say it again: Mauck Girls are the best, and it makes my heart happy to have a second generation of kindred spirit friendships for my girls.
