Wednesday, April 8, 2009

Wed PM

Okay, I'm a little mellowed out now. Still not happy about May 5, but Gina has convinced me that it will be alright. Perhaps someone will reschedule and make an opening. Shawna, my nurse friend, is mailing the video of Steff's episodes to Mayo, hoping they realize how difficult this is on her. and us. Don't really know if it will make a difference, but at least they will be familiar with the episodes and we won't have to try to describe them. AND it's not like I can say, "Steff show them what happens." I'm glad I have it on CD, I won't watch it or put in on our computer, but it will be good for them to see what happens. Another piece of good news. The Ped Orthoped that I took Steff to asked about her, and my dear friend Holly gave him an update. He also wants the CD so he can share it with all his doctors to see if anyone anywhere has seen anything like this. I believe he is beginning to realize that it just might be the GARDASIL. I feel like I'm making a little progress, or maybe I'm getting some medical help in my corner. REALLY, all I want is for her to get better.
She went to the baseball game tonight with Laney. Yes, I went also. I'm just not ready to let her go, in case something would happen. The not being able to breathe during it concerns me a LOT!
BUT I know you all have read that several times and get it. I'm sure people that don't understand what is going on, look at her and think she looks fine. If they knew her though, they would see a dull face and sad eyes. She still smiles and has fun, but it's always with her. and so am I! LOL Oh well, it is what it is. We decided to do the home bound thing for her education. That way she won't get so far behind or have so many days against her. She seems fine with it. Probably a little relieved not to have to fight off the episodes or worry about having another one at school. Besides, we'll save money on the ambulance rides. (joking.) Here's to hoping she has a peaceful night tonight.

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