Walking into the new Shirley Ryan Ability Lab is like walking into some kind of high-tech deluxe accommodations. The rooms are huge allotting for plenty of living space and lots of storage to stash clothes and snacks, we’ve got a lot of snacks. Our room faces due east with a gorgeous view of the morning sunrise, we’ve got a large flat screen TV on our wall, and the best part is that it’s all to ourselves, no roommates. But the shades don’t block out the sun very well so Aleck is up every morning at 5:00 am and you can hear him desperately trying to stay quiet and go back to sleep since he knows he can’t wake us up until 6:15 am. But our wake-up time truly doesn’t matter since the sexy new modern pull out couches have to be the most uncomfortable places to sleep since my grandfather’s pullout bed in Michigan, and that thing was so bad we use to shlep our Areobed from Chicago just to get some rest over there. Lisa, I don’t know how you did it for two months with Mia.
The Pediatric Rehab lab is fabulous. Even during their super busy times of the day, between 10 am and 3 pm, there is still enough room for everyone to focus on their therapy, enough corners for a bit of privacy, and you can’t help but watch some of the high-tech gear, like the treadmill with robot legs and a screen that simulates different terrain when walking or running, a treatment our nephew Jack was a tester on when it first appeared at the new lab. For acquatic therapy Aleck heads to the 14th floor where the new pool has powerful jets perfect for loosening tight muscles, the gaggle of 60 and 70 something women we saw enjoying it couldn’t say enough about it to Aleck went we up there to tour it before his first session. And since all of the floors are clearly listed in the elevator Aleck loves to ask everyone what floor they are on and then connect it to the specialty, asking if they are on the endurance floor for hands and legs, or on the brain floor. The top floor is labeled the “biologics lab” and almost everyday Aleck asks to go see it, we are going to have to find someone to give this boy the 5-star tour.
But as my friend Cathy remarked, for as shiny bright and new as the place is it’s still a rehab hospital at its core and if you pay even a lick of attention, it’ll break your heart right down the middle. Babies barely a year old left without any family members to care for them or even visit them as they are fighting their battles day in and day out. Teens whose lives will never be the same because of a miscalculation on a bike ride. Or the nurse who adopted a girl when she had been brought to her own hospital due to shaken baby syndrome, barely conscious during her therapy sessions. That same nurse went on to adopt the rest of that baby girl’s siblings in hopes of giving them all better life. We have nothing to complain about.
Aleck has been there for two weeks and has made great progress. He’s out of diapers as of yesterday, all of his bandages are finally off and he had his first session in the pool which he absolutely loved. Instead of sleeping with that ridiculous full body splint at night he’s got a new pillow and strap brace that goes between his legs which allows him to sleep on his tummy at night, his preferable sleeping position. Get him at the right moment, when the Nintendo is nowhere in sight, and he’ll tell you all about how hard he worked with his walker in physical therapy, or about how he refused to touch the slime in occupational therapy, and how much he enjoys visiting with the doctors, nurses, and PCTs(patient care technicians). There are a lot of familiar faces here and they all remember us too, and the sweet little baby who used to give them all the stink eye. In a way, it’s been like hanging out with old friends, and just like riding a bicycle it’s all coming back to us. We know that setting goals are crucial and our Thursday morning meetings with the entire staff are not to be missed. I’m heading downtown right now for our second meeting and this one might be a bit stressful. From the sounds of it, we don’t have our PT and OT orders in place or any sessions reserved for us at day rehab, which is really concerning. There is no way we are leaving without sessions set up and ready for us a day or two after we check out, and since our checkout date right now is August 21st, Tuesday, there’s a lot that needs to get nailed down. He needs to get fitted for his wheelchair, we need our rental walker until our new walker comes in, and there needs to be a clear plan in place for us so that we can continue this work without a large lapse, because September is right around the corner and we can’t afford to lose any strength or confidence that Aleck has gained.
He really is a trooper. This was a kid who could wear me out on the playground only a few months ago, practically running down the hallways of his school, jumping up and down in our dining room, and getting the hang of the stairs at Komiskey. Now he’s starting from scratch with the best attitude we could ever have imagined. He’s proud of each and every accomplishment. On Monday it was the first time he used the walker without anyone holding onto it and when he and the yellow wheelie reached the other side of the floor where all of his nurses were he couldn’t wait to share the good news. We make sure to include him in the meetings, to understand his goals, but he has also needed a healthy dose of tough love. It’s important that when he’s scared he tells us he’s scared instead of screaming so loudly the therapy manager thought someone’s limbs were being removed with a butter knife. And when he’s in pain he needs to use his words to express that as well. We had a situation where we couldn’t tell the difference so his therapists pushed him through and it turned out he sprained a muscle in his knee. He was a fine a few days later, but we don’t have the time for a repeat performance. It’s funny because he has been this way since he was a baby. At 4 months old our physical therapist used to turn to me and ask, “is this a pain cry or a hungry cry” and I honestly never knew the difference. He’s so verbal he needs to be taught now that crocodile tears are not an effective form of communication, and things are getting a bit easier. There’s a lot to unlearn from his time in the hospital this summer and his time during recovery, but he’s handling it all in stride and with a smile. I tell him every day how great he’s doing and he always answers, “thank you mommy.” We are so incredibly proud.
Click below for a video of him learning how to use his walker.
What a difference a few days makes in Aleck’s rehabilitation. Above you can see how hard it is for him to move the walker, now watch Aleck taking steps with his physical therapist without using a walker, this just happened!
