Sent: Sun, 8 Feb 2009 6:27 amSubject: Our Medical Mystery......
Hey guys! It's 5 am on Sunday. Steff had a GREAT day yesterday. She had 4 episodes, all after 5 PM. The first one was her entire body, same as it has been. The others were more controlled. She lays flat on her back, with her legs moving, then lower body, then her chest thrusting into the air. She says she is controlling it, but I'm pretty sure the meds are doing most of it. I'm hanging in there, but am beginning to wonder if this is giong to go away. I left her with her friends today, knowiing that Sadie would take good care of her and contact the nurse if they needed her. She had fun, they watched movies, went out and played Basketball, played karaoke and laughed a lot! I was very proud of myself to step away, because it was difficult. I left yesterday morning at 10ish, checked in on her around 5, and didn't return to the hospital until 8 PM. Well, being that she is a VERY spoiled teenager> that just wasn't good enough. She didn't want her friends to leave when it was time. It got u g l y. She said a lot of mean and hurtful things to DAve and I. I know she is frustrated and tired of fighting for control of her body. I know it must hurt really bad. If I could trade places with her, I would. I am trying very hard to make this ugly thing go away. We are doing the best that we can. I've had a very positive outlook and definately positive energy. I, too, am frustrated and tired of watching her be in pain. Tonight, I realize that there may be a few changes in her life. There might be a chance that she won't get back to that graceful dancing young lady that she was last week. I think that she, too, is thinking that. Her body struggles hard to even walk. It breaks my heart. Her cheer squad is doing a dance for Senior night at the end of the month. She asked me tonight with tears in her eyes if I think she will be able to do it. I strongly answered "YES! That's 2 weeks away" I only hope I'm right. I haven't read about dystonia yet- not sure if I'm ready. However, Josh was very upset after he read about it. I have all my questions written down and will be ready for Dr. Patel this morning. I'm off to take a shower and go back into the dark- don't even care today. Guess I needed to come home and vent and pray just a little bit harder. I will deal with what ever we are handed, but by golly, I don't have to like it. I will act like it's okay for Steff's sake, but, NO!, it's not okay with me! Deep breaths can only work for so long. Maybe the hot water will help bring that peaceful feeling back, I can only hope. Keep praying for our little medical mystery girl. Love, Robin
Hi Guys!! Steff got out of the hospital today. She has bad muscle spasms and something that looks like dystonia. He says her symtoms are too severe for dystonia and what she has, he believes she will get better and this will go away. Didn't say it would be tomorrow or next week. But to be patient. She will be returning to school on Tuesday (if the spells are mellow on Monday), but not a full day. I will have to check with the school and make a plan. She is very excited to get back on track, we just have to be careful that she doesn't overdo it. Rest and diet seem to play an important role. She can't drive until we see Patel on March6.Her spells were calming down and weren't violent when we left the hospital. However, when we got home, she was feeling overwhelmed and went into the violent spell. It's 11 pm and all is good. If things continue to improve, I'll roll with it. If I don't see much impovement, I plan to get a 2nd opinion or consult an Orthopaedic Dr. for her back. She starts PT on Monday and if we have time, I plan to take her for a massage to loosen those tight muscles. Depending how her body tolerates the PT. Her walk is still horrible. I really hope to get it in check before sending her to school, hopefully loosening the muscles will help. Walking tires her out quickly.It feels good to be home and I think she will get a good nights rest. That's all I know right now. Take care, and please keep praying for her. Everyday should make a difference.