Day 15

Avery had a pretty good day today. She was off to have an MRI this morning at 9:00 AM and was finished completely at about 12:30. They mangaged to get an IV in her left hand during that time too, which is great. However, the docs have decided against removing the central line. The anesthesiologists actually want to save it for surgery if it is still working and there isn't any real infection concern. They will put in a PIC line during the surgery, so they are saying, which will mean that the central line should be able to come out within a couple days of surgery. The PIC line can be left in much longer term if needed. We certainly hope there will be no cause to keep it longer than the post-op recovery period. I put Avery in her red Tumbleform positioning chair today, and she seemed to like it. She sat in it for a least 2 hours without getting too upset (al least not for any sustained period). Of course, she had had a PRN does of Ativan for a seizure cluster just after I put her in it...so that may have helped her stay so clam. She did stay awake though. It was so nice to see her doing something "normal" from before surgery. I like to think that she recognized it as something familiar, and thus was relieved to "know" something in such an unfamiliar place. The nurses loved seeing her in it. They also want her to be better and have more happy periods throughout the day. She has had some really great nurses in the IMC. She has also had some really great and thorough floor team docs. We owe them a lot for taking such good care of her. Jon and Caiden went to the Science Musuem this afternoon and had a great time per report. It has been cold here today....supposed to frost over night. Jon and I realized that neither one of us brought a "winter" jacket...so we are hoping this cold of a cold spell does not last long. We will see. Well, I don't know a whole lot more at this point. We are scheduled for early Monday morning. It will be a long day (longer than before) as it is a more involved and time-intensive surgery this time around. We are anxious, but eager to get beyond all of this and see the results in a better quality of life for Avery. We want nothing more. Love and blessings from Maryland. Holly