You know when the clouds part and reveal a perfectly blue sky and suddenly a bright colorful rainbow appears...that's a glimpse of how I felt today. I feel like 200 lbs have been lifted from my shoulders. Like I was being heard for the first time during the past 10-15 months of Erin's mysterious diagnosis. Like it wasn't all in my head! Why all this euphoria you ask? It was my physiatry appt. To say it was amazing would be an understatement.
Sean and I thought we were going somewhere to discuss Erin's physical behavior with one doctor. They'd look at her, we'd leave and still feel like we don't know anymore than before or where to turn next - NOT the case today. After we checked in we were greeted by a TEAM of specialsts. Just when I thought we had met everyone another doctor introduced themselves. I couldn't believe they were all here to see me...Erin. I thought Hmm, maybe they read her medical write up and want to do a case study - is she really that bad or unusual!? Much to my delight and surprise this is just how they roll at this office.
They escorted us into a large room that was less like a doctor office's and more like an amusement park or mini gymnasium. There were mats on the floor, stair climbers, jump ropes, balls, toys and special walkers and tables. As they explained what specialty each person had they explained what they would be doing. After they asked alot of questions they put a large mat on the floor and play time began. The team sat in a circle will Erin in the center. They evaluated her movements, bantered back and forth about posterior this and range of motion that. They cheered her on as she tried to reach for things or follow an instruction. They picked up on things that E.I. had not mentioned. Things even I as her mother didn't notice. They listened, they explained everything, they told me what she needed next and then told me what she will need AFTER next. We had a game plan ~ Finally!
After the evaluation was over they said she should be fit for bilateral AFO's (ankle-foot orthosis/ankle braces) which will help her stand correctly, they wrote her a prescription for a stander that will help her core and leg muscle strength and get her up and present in the world instead of on the floor all the time. They increased her physical therapy for once a week instead of once a month (in addition to her OT, Developmental Specialist and speech) they discussed equine therapy once she turns 2.5. They got her an appt. with a GI specialist when everyone else told me it was just a laundry problem.
I was expected so little but was given so much. Prayers answers...again Thank you :) ~ (wink, wink), God.)
Great day!
1 comment:
congrats on a fantastic appointment!how much better things will be with the stander and AFO's. Also ask them about the smart walkers. I dont know if they still use them but its a device that erin would go in (later when she is more ready to walk) and it patterns her legs to walk and step properly
<3 love annemarie
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