January 21st

Although Ashley has been home less than a week she is heading off to her third day of therapy. As I speak the flooring in Ashley’s temporary bedroom is being laid. She will be coming home from therapy to a much improved living environment.

Ashley had company this weekend in the form or both relatives and friends. It is obvious that she is enjoying being home. Several times now we have brought Ashley out to the family room where she could sit on a sofa to watch a movie, and yesterday a little football. Since Ashley can communicate to us via her ‘Yes’ button we are able to ask her what she wants to do and then do it.

Along the topic of the yes button, Ashley reached a new milestone on Friday; speech. While at therapy and in the presence of not one, but three speech therapists, Ashley whispered a response to one of them. The question was what her favorite sport was. The therapist nearest Ashley told Mary (who was temporarily out of the room) she thought Ashley might have said tennis, but that the only unmistakable sound was an ‘S’. Mary told them that Ashley has been a competitive swimmer for years. The therapist said that must have been it. While it was difficult to understand it was not just sound it was the formation of speech.

We have not heard Ashley annunciate since (you can imagine that we are coaxing her) but the therapist said that she most certainly managed to get the complex signals to all the muscles that were necessary to create more than just a sound. To say we were excited is the biggest understatement so far this year!

While it is wonderful to have Ashley home she will be going back to Chicago (Northwestern Memorial) at the end of the month for a medical procedure. The procedure is to implant a pump that will provide Ashley with controlled doses of the muscle relaxant she receives. At this time she takes the medicine orally (though her peg-tube) which requires higher dosing with a side affect of drowsiness. Following the procedure she will go back to Rehabilitation Institute of Chicago (RIC) for a week to 10 days for evaluation to get the dose just right before coming home.

The original plan was for Ashley to have the procedure before coming home (at least that is the excuse I am using for not having the house ready for her) but the scheduling did not work and we were anxious to get both Ashley and Mary home even if there would be a return trip. Looking on the positive side we can consider the nearly three weeks Ashley will be home as the trial run. We will be able to ask questions about the transition to home care from the hospital setting we would not have thought of until we experienced it.

Father Jason from St. Vincent’s came over on Sunday to provide Ashley with Holy Eucharist. All you need to see is the smile on Ashley’s face to realize how important her faith is to her. It is that faith, combined with your loving prayers and her unwavering motivation, that will she her through this challenge to a full recovery.