We drove to the circus during one of the snowstorms, but it was worth it. But we kept things more low-key this time around and really focused on enjoying our increased time together, Emily and I did manage to get out and enjoy ourselves a bit, at the Detroit Zoo and at a circus. We overlapped again with several other families we have seen at Europeans before, which is always fun. We had a wonderful time seeing our friends at Euro-Peds and at the Marriott Residence Inn. I wore sandals during our first week, and we had snow several times during the latter part of our stay. Spring in Michigan was as unpredictable as always. I’m eager to see where we can take these abilities in Emily’s therapies at home. She developed good facility in blowing various types of horns, along with a harmonica. Emily also did well with working on the various sound she can make. By the end, she was taking a vibrating lollipop and willfully moving it around inside her mouth, and she had developed much more awareness of and facility in curling and moving her tongue around – all important components in production of sound. When we started at Kaufman this time around, Emily wouldn’t tolerate a lollipop anywhere near her mouth and her tongue primarily stayed stationary, flat in her mouth. Emily made much progress in her oral motor work there, as her oral sensitivity decreased considerably. I’m attaching another picture that shows Emily saying goodbye to ‘Miss Emily,’ the OT who worked with her at the Kaufman Center. I’m really looking forward to continuing and furthering these gains, at home and in school, through use of the home exercise program developed by Mel. While supported by bands and a harness in the ‘cage,’ Emily even started to get the idea of the mechanics of jumping, which was pretty cool to see.
Emily made some nice progress in stepping up and down from a high bench, kicking a ball, and in doing squats while standing on a balance board. The picture of Emily on the bike, with her therapy team, was taken at the end of her final session at Euro-Peds – still smiling despite being pretty worn out after four weeks of intensive therapies. She didn’t seem to mind lifting weights in the Ugle as much this year, and Mel and Ciera made it as fun as possible, with assist from Emily’s various Bert dolls. We definitely need to continue that work back in NJ, but as the picture shows I was happy to see Emily bring her shoulders down and start moving her arms more appropriately. We had Emily practice walking with her arms in splints, and she made some nice progress, as you can see in the picture. We worked a lot on Emily’s walking posture this time around, as her slight scoliosis has increased (thanks to puberty/estrogen, as has her seizure frequency), and she tends to bend at the elbows, punch up her shoulders, and fix her body in place as she walks. She always gains weight during the intensive therapies, mostly muscle, but this year I brought home eight more pounds of Emily then I took to Michigan!! I think full-throttle puberty has something to do with that, but it’s definitely muscle, too!! That carrying Emily around thing may not be feasible, in the not-too-distant future. Despite that, she still woke up and put in a good, solid effort in her afternoon therapy sessions. We squeezed in a short nap in between, and I typically carried Emily out to the car and she continued sleeping during our 20 minute ride to the Kaufman Center in the afternoon. Despite her very busy therapy schedule, Emily put in solid effort during each PT session at Euro-Peds, and during each speech/oral motor session at the Kaufman Center. We were blessed with good health this time around, which really helped things go smoothly.
Our month in Michigan just flew by and we are adjusting back to regular life in NJ. Emily’s diagnoses includes cerebral palsy, global developmental delays, myoclonic astatic epilepsy, apraxia, sensory processing disorder, and re-flux.
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