November 12th

The highlight of last week centered on nutrition for Ashley. She has had an on-going, on-again-off-again issue with nausea. One look at the list of her medications points out the likely culprit. Almost every one of them lists nausea as a potential side affect.

As such the nutritionists and doctors have tried several strategies to overcome this problem. We don’t know if we have hit on the right combination, or if Ashley is just more able to fight the nausea back, but last week was her best week ever. We are hoping this is now one thing on the list of concerns we can put behind us.

In all Ashley did well in therapy last week. She started out strong right from the start and stayed at that level all week. The only set back we have seen since her trip to Northwestern Hospital a couple of weeks ago was her immediate head movement to track sound or movement. She is still turning her head, but not with the same frequency, nor a fluid as before.

Pain management may be what becomes a focus area. At times Ashley seems unable to get comfortable, but then with no change in medication she will sleep all night and have a good day. We think it is a combination of muscle cramps and neurological activity. Until we have a consistent communication method we can’t be sure.

This week we will likely make a major decision. We are discussing an active treatment for Ashley that may assist her recovery. Since her condition is so rare it is difficult for the doctors to even attach a percentage of likely success of it. The down side is that the treatment takes two weeks and Ashley would likely have to be transferred to the hospital. As such she would not receive therapy for that duration. Should the treatment have no measurable affect the loss of therapy during that time could be detrimental.

The neurologist is conferring with Ashley’s physiatrist (physical medicine doctor) to determine the possibility of continuing Ashley’s therapy at some level during the course of the procedure. We would appreciate your prayers for guiding us to make the right decision for Ashley.

Once again Ashley beamed as we read her the comments from the site. She also enjoyed the cards that have been mailed to her. She is fully aware of all the support she has and we know that along with all your prayers that is what has kept her spirits up. It is truly a gift that Ashley is able to keep a positive attitude and continues to persevere.

Chicago can’t wait for the traditional start to the Christmas shopping season. This Saturday Michigan Avenue hosts the Magnificent Mile Lights Festival. If the weather cooperates we plan to take Ashley out to enjoy the parade and fireworks along the Chicago River. We won’t be out too late since it gets dark so early the fireworks begin at 7:00.