Okay. I know there are a lot of questions out there. I will answer to the best of my ability... so....
Here's my brain of thought. I spoke with Dr. Flannery, I did ask him if they throw the word "seizure" around lightly or are these girls REALLY having seizures. His reply was no, it is not lightly, they are blacking out. This to me, pulled Steffanee from that crowd. Do I think it's NOT the Gardasil? No. Perhaps her body is fighting for all it's worth to get through this and had more of a chance than some of the other girls. Perhaps her barrier that was weak is now strong and can help her heal. Is she much better? Yes. Do I know why? Not really. I do feel that the Keppra 500mg 2X daily has helped. I'll give it up to prayers, her body getting stronger, and her positive energy about healing. Is she fixed? Absolutely not. Are we getting there? I believe so. Is she learing to tolerate the pain? My guess would be yes. Do I have to have answers? Well, that IS my personality, but I'm trying really hard to let that go. Dave is the parent that seems more rational, he is the one staying grounded and mellow. I'm up, then I'm down. (that's a song!) LOL Did I answer your questions? I tried!! Sometimes, I believe there are no answers. Is she going to do the dance? Not sure yet, this not sweating thing is my concern. Do I think it will hurt her back? possibly, but she says no it doesn't. She's also 17 years old and wants what she wants like right now! I know I'm known for saying, " I'm Not taking questions", jokingly. But if you have questions or ideas, don't hesitate to email me- I will see that before I see a comment at the end of my post.
I did go in, copy and paste each email I sent out in the beginning. I tried to date and make it in order, not sure if I accomplished it. This way, if parents (Gardasil contacts) that I've given this blog, need a time line to compare our medical issues, it's there. Actually, I was glad I updated each day. I printed all and gave them to the Dr to read. Yeah, some of it was personal, but some may also give them an insight into what is going on with Steff. Besides, who knows, after this, I'll probably/hopefully never see them again.
Now, about Steffanee. She has slept all day. She was not interested in getting up this morning at all. She did stay out late, the movie was a late one, then I believe I heard her on the phone LATE. I know she needs her sleep, so I let her. She got up around 1ish, ate lunch, (entirely too late for breakfast!), I started her on the new pill (D convinced me to trust this Dr. and let him do his job), she took it and now she's asleep on the couch. Somewhere in there she did take a shower. She is planning on going out tonight for S's birthday! We will play it by ear on how late she can stay, or how much she can do. This new medicine is supposed to tell him if she has dopa responsive dystonia. We'll see...... At least it doesn't stay in the body. So, if she has a bad side effect, it will only last a short time. AGH! Like she hasn't been through enough!
It's been a mellow day around here. I'm working on wash, cooking and taking it easy. A wants to go do something. I'm thinking we might while Steff is out. We will see....
There you have it, again today. Not much going on around here. Tigers won!! I'll give feedback on this new med possibly tomorrow. Again, questions? or if you have answers...email me. It's at the top of this page. Have a good day! ME
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