This is a low quality video of our Jessi singing to Bella. This is Bella’s song from Songs of Love. We think it’s sweet – and right on with her sweet personality.
Jason and I have some decisions to make. After much paperwork and the nursing home stay, Bella qualified for MDCP (Medically Dependent Children’s Program). It gives us more nursing hours and a certain amount of money for home modifications. We are grateful for the nursing hours. Our nurses are life-savers and I am grateful to have them. I am grateful for the money for the home modifications, but we aren’t sure what to do. Bella’s room was our formal dining room. We want to add doors to her room for privacy. The paramedics have asked for a sidewalk. As they carry the gurney out to the ambulance, they have to walk over our pavers and some tree roots. For safety we will do that. But what else? Unfortunately, this is a one time shot. We have to do everything right now. We can’t do some things and then in a couple of years, do more. Well, I guess we could, but we would be paying for it from our own pockets. Today I talked with her nurse, her therapist, and the contractor who specializes in remodels for those with disabilities. If only we had a crystal ball….will she need a roll in shower? Or will she become mobile? Today, she will not tolerate weight on her legs at all. If you pick her up, her little legs curl up like frog legs. Will she get off the vent? Today we are desating again. Hmm…I just don’t know whether or not to try and add some handicapped accessible facilities to our house. The contractor said to also keep in mind resell value. If we start adding random showers and closets to rooms, how will we ever sell? Not that I see us ever leaving, but…. And what if this coming summer she suddenly gets better? Then I don’t need any of it. Sigh…I need a crystal ball. :) What a blessing that this program exists. Even if there is stress, I am grateful for this opportunity!