February Update

OK, we know it is time for another update, however, we often feel as if things haven’t changed that much so we don’t write much. The reality is, things continue to deteriorate. As Dawn has herself expressed, “This is continual!” whereby she means, “You guys are always changing things around in the house because the things I can’t do keep increasing.”
Perhaps the best way to give you some indication of what has been happening is to let you know some of the things that we have had to add or change over the past month.
We have brought in a Hoyer Lift to help on the occasions when Dawn needs to be moved and she does not have the strength to assist us.
A Hospital style bed has been added so that she has greater flexibility in the pressure points on her body when she sleeps. In a regular night, she will need to be turned over every 1 1/2 – 2 hours because her hips and shoulders become so tender. This despite the purchase of a memory foam/egg crate pad to place on top of our cushioned mattress.
Today we purchased a new cell phone for her because her previous one was too heavy, and she was having difficulty hanging on to it while she was using it, or dropping it as she was picking it up.
We have added a small collection of neck pillows to help to support her head and neck while she is sitting in her chair.
An additional medication to dry out her mouth has become necessary as she is having increased difficulty handling the normal saliva and drainage from nasal passages. The suction machine is getting regular use, and she regularly experiences the sensation of choking and not being able to breath because of saliva and nasal discharge.
On Monday we go in to have her G-Tube replaced. While there Dawn will have pieces of flesh that have grown from the wound cauterized. This will be the third time in three weeks. These little pieces of raw flesh are the body’s attempt to close the open wound from the G-tube. They are extremely sensitive and painful, and must be cauterized to deaden them.
Living with so much loss each week it sometimes seems very scary for Dawn. Yet, it does not take long to realize that Dawn is not ‘dying of ALS.’ She will be the first to tell you that she is trying to see this as ‘living with ALS.’ Therefore, when sitting with her, one is quickly able to experience her humor and feel the warmth of her smile. She is open to share the emotions of pain and sadness, yet her compassion and care will triumph! For this we give thanks and are the recipients of her strength and grace.
We have had visitors (kids, grandkids, and/or friends) almost every weekend. Their help and presence continues to be appreciated, and offers Jill and me at least a temporary break from some of the daily routine.
Thank you for your continued prayers and support. We value being a part of the Caring Christian Community!