May 4, 2009

My mom

This is a page I made for my mom. It's from a (nameless) kit I'm working on.

I've blogged before about my mom having Progressive Bulbar Palsy & ALS (Lou Gehrig's Disease) so I thought I'd give you an update. Her speech and ability to swallow is continuing to decline. She is using a dynavox (loaner) to "talk", plus she writes notes. She recently had a feeding tube surgically implanted to help prevent dehydration since choking on liquids is a problem. Her broken shoulder is healing well but her use of it is limited because she developed frozen shoulder. She has opted not to have surgery on her shoulder and the family supports this decision. She is beginning to fall more frequently. Her left leg has days that it doesnt work so well. She is still trying to be independent but I have been in contact with the ALS office to try to make arrangements for a wheelchair. We know it will be needed in the near future and do not want to keep putting it off and not have it when it's needed.

Most weeks, she is in a doctor's office more than she is at home. Physical therapy and respiratory therapy are a way of life.

The pictures above were made recently. Look closely, we are smiling. The disease is devastating but we are not grievous. We said in the beginning we wanted to find something good in this disease and we strive daily to find the good.


If you would like to help, there is a charity kit called "I'm Still Alive" and all proceeds go to my mom's medical expense. You can read about the designer call HERE. The designers who contributed are listed HERE.

The kit can be purchased at these stores:

1 comment:

Wendy said...

My prayers continue to go up for your mom. I love your picture of her, I can tell where her daughter and granddaughters get their beautiful looks from. ((((Huge hugs my friend))))) Wendy