Feb. 8 & 9

Feb 9 update
I took Steff to PT today and was really impressed with her therapist. She had a "spell" in the waiting room, they were on it, we took her back to a mat for some privacy. Angie was very soft spoken, had Steff lay on her tummy with her hands layed flat under her, like a push up. She kept telling her to breathe deep, then she put pressure on her shoulder blades for about 3 min, then her middle back and her butt until she felt Steff's muscles start to relax. It was amazing. That's our new plan if it continues to happen. Angie thinks Steff will be ready to do the Cheerleading dance on Senior night. She will be seeing Angie on Wed and Friday. Working on the walk will come later. She feels we can fix this! This is totally good news. Of course, she's fixing the muscle part of it, who knows, maybe that will fix it all. She will be going to school for 2-3 hours tomorrow. She and the counselor, put a plan in place. She has a "go to" friend in each class that she will teach the technique of calming the muscles. She also showed her Stats teacher, which is the one that was with her both days it happened at school. I feel better about her going to school knowing we have a plan in place. Angie said no massage for at least a week. Steff also attended cheer practice today, just sat and watched, then showed them what to do, and took questions. LOL She's sound asleep now. Hope she sleeps until time to get up for school. Today was a VERY GOOD day for her. I am so glad. We're taking small steps with Steff in control. Thanks for all your prayers, we are getting there. Later, Robin
Maybe Feb 9, late or Feb 10
Hey Guys> I had really hope to stop these updates, but we aren't there yet. I've been on the phone with specialsts and hospitals today. Steff did go to school this morning. Her back was tight when she left. I got a call around 10 that she was having another spell. The girls tried the new technique that we learned at PT. It didn't work as planned. Probably because Angie has had years of training to get where she is. We'll keep trying it. She wanted to go out to eat after I picked her up (at this point, she can have whatever she wants ) After lunch we rode around with the sunroof open, with Taylor Swift blaring out of the stereo. That is what she wanted to do. She sat in the front seat, feet on dash, and seat layed back, singing. The sun felt good. Yes, I took the back seat. She took a 2-3 hour nap when we got home. She got dressed and ready to go to the game, against my better judgment, I took her. All went well. Her muscles tightened up after sitting through the game, so her walk went south, but she didn't care, she was happy she got to go. Needless to say, I was a nervous wreck the entire game. We had a plan. We were going to leave the minute her back started twitching. My feeling on today... she isn't in control of her body, so she can have some control over her life. She took a benedryl and is sleeping peacefully as of now. Tomorrow is a new day. Okay, the progress I made today. Blue Cross researched and gave me a dystonia clinic to call in Maryland. I know, she wasn't diagnosed with dystonia, but this looks like it in a lot of ways. She asked me a lot of questions and was very helpful. She suggested a second opinion with a larger hospital and to make sure they have a neuroscience dept. She also questioned me about the HPV, Gardisil (sp) vaccine. and Yes, Steff had her last one on Jan 5, one month ago. She said reports have been made with a lot of complaints on the vaccine. I asked for information and thanks to all that found it, I am wondering if that could be it. I read that 509 cases have been reported with muscle spasms, involuntary muscle control, among other neurological problems. I will be calling CDC tomorrow. I had asked Dr. Patel about it and asked again today. His answer .no.. she had this 2 years ago. Okay, he can't get past the fact that she had passing out spells 2 years ago. I don't connect the two. He can't separate them. I called his office and asked for her records, so I can hand carry them to her 2nd opinion. I also called her primary dr and asked for mild muscle relaxers so she can sit comfortably in the desks at school. They are to call me back tomorrow. I know this is a long email, but it has been a long day. Overall, it may not sound like it, but I think today was a pretty good day with just one spell. The naps seem to help. She is returning to school in the morning. I hope it goes well. She has PT at 1. Keep your ears open for any info that you think might help us. Have a good day!! Robin