Yesterday I got the Pittsburgh application in the mail. Like I said earlier, there is a LOT of required information. Since I wasn't around at the beginning of K's life and when she was diagnosed, I don't have any of that info on hand. So today I began the process of printing and filling out paperwork and making necessary appointments.
This is what I've done today:
- I am working on filling out a medical records request from Children's Hospital - Seattle.
- I called and scheduled an appointment to get the results of a recent overnight sleep study we had done (because the Institute needs a recent sleep study).
- I called and scheduled an appointment for an EKG (again, CI needs a recent EKG) and to discuss with K's primary care physician the referral letter we need.
Tomorrow I will mail the request to Children's, call the UW Medicine Genetics department and try and get a records request going with them, and call the school to find out if K has had a behavioral analysis done. When we go see her PCP on Monday, I will see if she thinks we need to set up an outside psychologist for K also. Phew! I feel like I got a good start on all that needs to be done, but am just taking the first steps. We also talked to K's mom A today and she seems to be on board so far. We let her know we're moving forward with the process. So much still to do!
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