Saturday, August 17, 2013
August is Spinal Muscular Awareness Month:
In June Bryce could talk and use many sounds. It was documented through Early Intervention and in my videos how he could wave, say hi, mama, go, help, zoo zoo, for zoom, and sign more, come. At this point because of the difficult visitation schedule, his I am sure emotional distress over the past few months, he can no longer speak. He makes some sounds that means yes, still can shake his head no and does reach out for things.
Communicating with Bryce is not too hard, my instincts as a mom have always been above par - He seems to tell me what he needs now with his eyes and some motions.
Life has not been easy with the current custody battle and complicated divorce.
We only had one situation a week or so a go when I had to call the paramedics. His O2 had dropped to 86. It was really great though to be with his doctors at OHSU again, they are so experienced with SMA children compared to Randall's Children's Hospital.
Still, I can't afford an attorney which means I have been representing myself and its quite difficult. I am doing my best and at the end of the day, continue to have faith and know things will work out. My work as a mother continues and I have done everything to care for my son and make his life the best it can be.
Time with Bryce is very precious . -
Day by day - prayer by prayer -