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Hating this disease

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H`i List-mates;

Thank you sooooooo much for your responses to my post. I was and am still sad. In a lot of ways I feel I lost my daughter. She is 240 miles away which makes visits difficult. I miss her horribly and can not visit as often as I would like. We were skyping for a while. It took months for them to get that together because of worry of hacking into medical records. They finally got a computer solely for that. It was so neat to Skype the Hanukkah lighting of candles and prayers to Miki and the other Jewish Kids there. The problem is I now have a second job which falls on their skype schedule and haven't been able. I guess I need to have a talk to them about rearranging the schedule.

The idea of a social story and schedule was great. I have to bring my PECs ring of pictures next time.

Sunday I left there an hour early as Miki started to tantrum in the car. I got her a Slurpee and she got a head ache from drinking it too fast and started banging her head. She also just put her head down and covered her eyes with her hands and pressed...which was a HUGE improvement of coping skills. I called them and it took 3 aides to get her out of my car at the facility. Not how I wanted to end the visit. I know I need to adjust my expectations. that is just easier said than done.

Again thank you all for the support...if it weren't for all this crap I wouldn't have met all of you...and for that I am grateful.

Jayne

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