So, It has been 5 weeks since Cade started GH and Dr. Miller said sleep study needs to be scheduled after being on them for 6 weeks. She gave me the name of a Pediatric Pulmonologist in Baton Rouge that has experience with PWS. He worked under her for a couple years in Florida. So, I called 4 weeks ago and had to leave message for the person that handles them to call me back. A week went by she never called, I called back and got voicemail again...Her voicemail says "If this is about a message that you have already left, please do not leave another message." Or something to that effect...So I have been trying to be patient. Well, I called back about a week ago and said I wanted to talk to her, not leave a message. I talked to her, explained my situation and that I needed to get my son in for a sleep study asap. She said she would be getting with the doctor and calling me back because we would need a consultation first. Another week later, and still no call back.....I can't be patient any longer! I e-mailed Dr. Miller about the situation and she called them right away. They told her that she would be calling her "right back." Guess What?? Yea, you guessed it never called...So, Dr. Miller e-mailed me saying she is calling tomorrow and going to use her *yelling* voice. LoL. She cracks me up sometimes. I seriously do not know what I would do without Dr. Miller!!! So, hopefully we can get that scheduled asap. It is very important to monitor with sleep studies while on GH. So besides that I am also in the process of trying to get more therapy through Early Steps for Cade. I am waiting on his case worker to let me know and we will see how that goes. I just don't think 2 hours a month of OT and PT is effective for him. Honestly, to me it just seems like a waste of time. How is that doing anything for his benefit? OT comes one week, and then PT comes the next..one hour, once a week. They rotate every other week. I have given it about 3 sessions of each OT and PT and I know that it is not enough. His private therapist had thought that Early Steps would be providing enough services for him for right now, so we have not been going to her. I guess we will have to start again soon. I have realized that I have to be Cade's primary therapist. I spend many hours throughout the day doing our own kinds of therapy. I know this is just the beginning of many frustrations to come, but it is my job to be his advocate. :)
So, today has been mentally taxing on me. From finishing up my Summer classes and final tests, to losing a dear, fellow PWS Mom friend, and then taking Cade to his first swim practice for the Special Olympics. I've shared extreme highs and extreme lows today, but as I unwind tonight I feel compelled to share this with whoever decides to read it. Some of you may know this about me, but most probably do not. I have always felt a strong attraction to working with those with special needs. It just always felt right and from a young age I remember looking up local jobs and volunteer opportunities..always searching for something to fulfill that desire. I was actually enrolled in college for Family and Consumer Science and was planning to go into Special Education. I had taken the Parapro assessment and actively looking for Para jobs. Then I became pregnant for Cade and life had other plans. Given my role now to Cade, isn't it ironic? OK, so here is an e-mail I dug up from my in...
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