She is still having significant difficulty swallowing. We met with Paulette today, a great speech/swallow therapist in Woodland Hills. Besides that fact that Madison hasn't eaten since October 18th, feeding tubes are an incredible inconvenience for her. The syringe pictured holds 2 ounces: simple math, 64oz of water a day means 32 syringes... that's just water. Another 42oz of liquid "food", an additional 21.
Amazingly Paulette has a similar bone graph in her neck, hardware too. Since she's been down in the same ditch, who better to help others climb out... we are very pleased! Suggested by Paulette, a video swallow test is being ordered to ensure it's only weak throat muscles. Besides the fact that food tastes really good and Madison really misses it, having 50+ syringes daily is incredibly inconvenient, and makes road trips interesting. That said, road trip!
Looking back a year, we had the privilege to see Nick Vujicic speak...a man with no arms, no legs, and no worries. You can read more and see pictures at this link. Nick is a huge supporter of XMO, Extreme Mobility (extreme sports) for the blind. Madison was a counselor there this summer. Despite extremely long days, she commented that was the most rewarding experience of her life.
Looking back a week... ROAD TRIP! Madison packed cans of food, bottles of water, and syringes (a girls's gotta 'eat'). She and congregation members/elders from her church drove to Loma Linda to support XMO and see Nick speak again. There's a very brief video at this link. Nick speaks to the power of HOPE... "YOU WILL GET THROUGH THIS".