YET, another LONG night....

Oh my gosh. Wait! Positive things first. We had company yesterday. Sounds like a fundraiser is in progress. It sounds very organized. We appreciate all the love and concern coming Steffanee's way. Although she doesn't "get it" at this point, she will later. She's just 17, she thinks we are rich. LOL But, really, I think she does. : ) And to her, maybe we are. Gotta LOVE her. That's MY girl. Do I need to mention how spoiled she is? LOL
I just want to put it out there that (I KNOW YOU ALL KNOW!) as a parent you just do what you have to do, you don't "think" about it, you just do it. Every minute of every day is consumed with getting her better and figuring this out. Thanks to everyone, I am sure this will help on the stress level, when we get "there". Financial is the LAST thing on my mind at this point. It always works out, one way or another. We do appreciate it very much.
Okay. Yesterday was a good day for her. She ran to the mall with Laney, and yes, I wasn't too far behind her, looking for Kendell a prom dress. : ) She called and met up with us after a bit. We all laughed a lot ~ like old times. Silly girls laughing over dumb stuff, all FOUR of us. Everyone knows we have some sick kind of humor. Oops! I mean "dry". She had a good evening too, more laughing and giggling. Then came bed time. The MUCH dreaded time to relax. Seems like she has narrowed this down to the fact that she has to stop fighting it and relax. That is when it takes over. I REALLY thought we were going to be event free. I was laying there thinking - wow! just one night of rest for all of us would be good. One night that her little body didn't jerk would be good. Wrong. It was totally different and it scared me more than ever. I'm not going into it, but I will say I called Dr. Patel at 3 AM for help. Dave called him again this morning at 10. He says he can't call Mayo until Monday. I say call today! Leave a message! WHATEVER! JUST DO SOMETHING! My wheels are turning in the meantime. We have an email address to the ped neu receptionist. YEP> I'm emailing her today with all the facts that have changed. It will be there first thing Monday morning. I think I can get my point across. You KNOW I can. LOL
If she is still having problems this AM, or whenever she gets up, we will head right back over to the ER. She feels safer there anyway. Dave is so strong and good with her. I, on the other hand, have started breaking down and leaving the room. Today I will have to make the decision to stop that and be strong again. How long have we been doing this now? Feb 2-April 11, or whatever day it is. It hurts to watch your child hurt. It hurts even worse to know that this was something I made the decision to do. The duck again.
I will tell one thing that happened at Gerbes yesterday. We were standing in line to check out, I noticed her shaking (not twitching) her head and closing her eyes tightly, several times. When she opened them, her eyeballs were all over the place, she said they burned. It looked like her eyeballs were quivering. It scares me. Something is not right. Like how many times have I said that? I just want someone to help her, us. I love her SO much and this is SO hard. I know we will be stronger when we get through this~ BUT let's get there already! Okay. Pity Party over. I'll get in the shower, pray for that peaceful feeling to wash over me and be strong again. I'm not giving into this, but let me tell you.....it is very hard to watch her hurt and not hurt with her. Here's to hoping she wakes and doesn't remember much about the night. Here's to hoping today is yet another fun day. We are going to pick up her prom dress after lunch. That will put a smile on her face. I'm supposed to get a haircut, but we'll play that by ear. I NEED it, but she comes first. Keep us in your prayers. Pray for a door to open for someone to recognize this and be able to fix it. We want our little girl back. I'm off to get that warm feeling!
By the way> If you happen to see Steffanee, please don't ask how she is doing or what is going on. Just treat her like you used to ~ give her a hard time about anything you used to. She likes that. She just wants things to be normal again. Don't we all. I'm out for sure!!!