The PICC line is finally out, thread below, no more IV meds needed!! Madison is down to only one hose, the feeding tube.
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".
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".
