Hump day

  • Posted on January 25, 2012 at 6:13 pm

Welcome to Wednesday. Today therapy was scheduled late, 10am, but that doesn’t mean you get to sleep in. The Parade still begins right after the 7 o’clock shift change. Ms Katie stopped by at around 7:20. I forgot to mention that when they returned Nica to me yesterday, they did so without the tray for her wheelchair. Dinner was not a pretty sight until rehab fabbed up a temporary tray using a lap board and Velcro. Nica accepted it and it got us through dinner. So, when Katie stopped this morning it was to tell they found the tray still on the bus. She kindly returned it this morning and now more is right with the world.

Dr Kornberg stopped by to take a look at Nica’s back, and do some range of motion with her. He’s still not sure about her duration here but mentioned that he was going to put the social worker on the task of setting up her outpatient therapy. He said that 3-4 hours a day is probably unrealistic at this point. I suspect it may have something to due with the shortage of pediatric PTs in Florida. There is a great demand and little supply. A problem that is exacerbated by now requiring a doctorate to perform the job instead of the masters degree that used to be good enough. He said that in Lakeland they’ll be looking at All Children’s, St. Joseph’s, or Pediatric Therapy Services. He said at least 4 days a week but it depends on facility schedules. I’m hoping we can work everything out to keep our Beckman therapies. If need be we could even resume PT there for a 5th day a week.

PT came at 10 today and Katie brought a student with her, Lauren. Lauren is studying to become a rehab therapist and she wanted to spend a couple of days in pediatrics to help decide if that’s the direction she wants to go in. Lauren is really sweet and Nica really took to her. Katie is concerned that perhaps Nica’s core strength isn’t were it needs to be yet in order for her to really be able to walk. She tried several combinations today, walker with and without the sling, with and without the knee immobilizers, and no walker. Nica had trouble with each of them. Reviewing Nica’s latest gait trainer video we could see that Nica was always prone to leaning forward when trying to walk. Bonnie thinks that it’s Nica’s comfort position. She explained that it’s typical for CP kids to have that one position they default to. Nica’s default position makes it that much harder for her to walk. Rehab is as much about breaking habits as it is about retraining and we need to get her back strong enough to break her slouching. Still, despite this, Katie commented that Nica has shown considerable improvements in her ability to control her trunk. She wants to change focus for a little bit to Nica’s posture. We’re not abandoning the walker, we’re just going to do more work on Nica’s trunk. The favorite exercise has thus become sitting on the edge of anything. Nica sits on benches. chairs, tables, and Pilates balls. The back up exercise is the stander. It supports her up to her waist and she has to keep the rest of herself upright.

We moved into OT right behind PT today. We worked with Lindsay and she had Nica on her tummy for a while in what’s called the prone position. From there she had Nica doing some puzzles and trying to string some beads. We did some more bead work from a sitting position, next. However, once Alexus brought out the Play-doh to work with Elijah and Nica saw it, she wanted to share in the fun. Today, we made a tower and, after her Godzillia syndrome kicked in, the Play-doh resembled a dog. It was quite interesting.

Being Wednesday, it was picnic day in the Alvin room, i.e. Child Life Center. It was the best meal I’ve gotten in this place. There was a pasta bar, and I enjoyed bowtie pasta with alfredo sauce and diced chicken fingers. I had to go back for seconds, once I realized it tasted like more. Nica had no time for food. There was only time for the work bench and doll house. She’s becoming and addict. I had to cut her off in order to get some food down her and let her take a little nap before afternoon PT.

Afternoon PT was more standing, this time while playing a Granimals matching game and some more Duck, Duck, Goose. By the end, Nica was asking for Michelle the Mermaid and considering that Lauren hadn’t seen her yet, we finished PT with Nica pushing her own wheelchair down to the window. I think I’m going to go down tonight with the camcorder to capture the window and the accompanying audio for posterity. I’ve asked several times if we could just take the window home but no one has said yes yet.

Nica is definitely done for the day, and I know she’s tired for 2 reasons.

1, she’s yawning like crazy, and

2, she chose to sit on her bed and watch The Little Mermaid over going back to the Alvin room.


Dinner has just arrived and Nica is crying about being hungry. Gotta go.

Stay tuned, Ray

P.S. I just found out that Nica was on the news last night. Katie’s friend called her to tell her she had just seen her on the news with a little girl and some pirates. Katie forgot to ask what channel. I’m going to do some digging and see if I can figure which channel and whether or not it’s on the channels website. I’ll let you know if I find it.

168 Comments on Hump day

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    Yeah! Erin saw her on TV too! She texted me and I was at my soccer game and couldn’t get in touch. So fun! :)

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