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…
Praying for all of the details, for Annie to be provided for, and for your daily bread for today!
Ugh, that’s so frustrating! Praying you hear quickly and that insurance gives Annie what she needs! Do