Baby Reesa – Health Update

In the last couple of weeks Reesa’s disposition has changed quite a bit.  We knew this would happen as the disease progressed but the reality of the situation has made us all sad and fearful for what the future holds.  Just a few weeks ago Reesa could track objects and people from across the room.  She would turn her head and look if you made a noise.  She seems to have lost this ability as she just stares into space and won’t/can’t follow you with her eyes.  Reesa is also slowly losing her ability to laugh and smile.  As late as a month ago she would laugh loudly at almost anything and always had a big smile on her face. Now her laughs are rare and have dwindled to tiny growls and her smiles are fading.  It’s amazing how much even the slightest smile can brighten our day.  Reesa’s saliva secretions have been increasing as well. Due to the risk of aspiration (pneumonia) we have to use a suction machine to clean out her mouth 5-10 times per hour.  We can no longer leave Reesa in the car seat without someone sitting in the back with her.  While in this position she needs to be suctioned frequently or she starts to choke on her saliva. Despite these latest developments, with some adjustments to her medication, Reesa has been comfortable and happy.

Reesa at 6 months

Reesa at 10 months