Hi everyone!!!
We have been sooooo busy I haven't had time to get on here lately. We started house hunting in August and after a couple delays finally moved the week of Thanksgiving. We're still in the St Louis area, just about 20 minutes from where we were, and 15 minutes closer to the hospital. I finally got my finished basement. Taylor has lots of room for her stuff. We kept our old house and will be renting it out. I put 10 gallons of paint on walls between Thanksgiving and Christmas, we had new flooring put in and I cleaned everywhere. At least all the holiday goodies didn't go straight to my butt this year, but talk about feeling overwealmed!!! Still have lots of organizing to do at the new house and we've vowed to stop being such pack rats.
To top it off Taylor was supposed to have the muscle graft in her cheek right before we moved. That had to be postponed at the last minute because she developed an abcess in her upper thigh. It started as a bruise and infection got in. She had a 102 fever the day they drained it. The doctor told her "Honey, we can do this here in the office, but it's going to hurt a lot." She said, "No way, you're going to knock me out." They did, and he said later she was smart to have insisted on that as it was deeper and nastier than it looked.
For those of you that don't know, Taylor is 19 and her 4.8 cm tumor was found almost 2 years ago. Surgery left her with right-sided facial paralysis, right-side deafness, drunken-sailor walk, coordination problems (handwriting), and tingling on her entire left side from her neck to her toes. She has since had eye muscle surgery and the first part of the facial reanimation surgery. Last February, they took a nerve out of her lower leg and grafted it in to a nerve in the good side of her face, ran it under her nose, and stopped it in her right cheek. That seems to have taken. You can tap on her cheek on the bad side and she will feel it on the good side. Now comes the second part. They will take a muscle from her upper thigh, graft that into her right cheek and hook the grafted nerve to it. They say it will take around 6 months to start working and will give her a more symetrical smile. Not perfect, but better. She is so self-concious now, we hope this makes the difference and gives her the confidence she needs. The surgery is tommorow, Thursday Jan. 24. We will be there (Children's Hospital-St Louis) until probably next Tuesday. He wants to keep her there a few days just to make sure. You are all such great people here, I know you'll keep us in your thoughts and prayers. I think she is dreading the boredom of the hospital more than the surgery itself. Her tumor surgery was a 5 week stay. She had to learn to walk again.
One more bit of news. After 1 year, 2 denials, and 1 lawyer, she was finally appoved for SSI. She started getting checks in November. A whopping $424.67 a month. Better than nothing but she wants more. If she lived on her own or with roommates she would get $637.00. Can anyone live on that? I know she couldn't. She is planning to go back to college in the fall and figure out what she wants and can do.
That's all for now. I'll let you know how she's doing as soon as I can.
Kathy
