Monday May 17, 2010

Anaya spent the day with her Nurse, Joanne, today. It is the first time I have gone to town without her. I needed to pick up a prescription, some diapers and breast milk. On the way I stopped and had lunch with Anaya's dad, Brent. It was like a first date. We are hardly ever alone together. It felt new and weird to be without our "little bird".

I had time today to think about what I may do with myself in the future. I think we may foster children that have special needs, or that are sick with degenerative diseases. I have been learning so much about caring for a special child, both physically and emotionally. I feel as though it is incredibly important that these children get the love and care they need. I think I'd be good at that. Anaya is training me well.


Upon returning home I was informed that Anaya had an excellent day. She was not too upset to stay with Joanne, which is a new thing. We have a new medicine called scopalomine, which helps to dry up her mucous. It really seems to work, although it sedates her slightly. It's so nice to not have to suction her so often. She really dislikes it. It makes her choke and gag and turn bluish. It's awful.

I've been talking to Autumn and Tom today, who are coordinating the next fundraiser on June 11. There has been interest in knowing more about Anaya's disease and the Hunters Hope Krabbe Leukodystrophy Foundation that we are contributing to. Please check out their website at www.huntershope.org

Here is an excerpt from their site.

"KRABBE DISEASE

Globoid Cell Leukodystrophy, more commonly known as Krabbe (crab ā) Disease, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems.

Children who inherit the disorder lack an important enzyme (GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is the protective covering of the nerve cells and acts like insulation surrounding an electric wire.

When the enzyme GALC is deficient, it produces toxic substances in the brain, causing myelin loss, change to brain cells, and neurological damage.

Krabbe Disease has four phenotypes: early infantile, later onset infantile, adolescent, and adult. Progression of the disorder is rapid and death occurs in early childhood in the infantile types.

One in 100,000 live births in North America are afflicted with Krabbe Disease. Approximately 2 million people (or one out of 125) in the United States are carriers of the genetic deficiency that causes Krabbe Disease. Yet, awareness about this disease is very limited. Until recently the only treatment options were limited to symptom management and palliative care.

Now, a new and revolutionary treatment, Cord Blood Transplant is saving the lives of many sick, young children and babies. This new method of treatment is bringing new hope to those afflicted with a variety of diseases including Krabbe, other Leukodystrophies and Lysosomal Storage Disorders."

The babies must be tested for the disease at birth and treated right away. It is too late for Anaya to have this treatment. We hope to set up a fund for Nelson parents who wish to have their baby tested for this disease as it is not currently done here.