Our Family & Congenital Myasthenic Syndrome

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Cool Blogs

Our favorite family photographer - Alexandra Delatorre!!! 
Fond of Silliness
Waymorefunner
Luke and Congenital Myasthenic Syndrome
Thrifty Decor Chick
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What Is It?

  • Congenital Myasthenic Syndrome
  • G Tube
  • Scoliosis

Mason's Current Status

  • Physical Milestones: Mason has a 60 degree curve in his spine, started walking at 18 months, low muscle tone throughout his body, modified Gower's when trying to get up from the floor, Ptosis in both eyes (intermittent), weak swallow and laryngeal penetration make drinking liquids difficult - still bottle feeding, he also has a significant speech delay but is finally learning to make sounds with his mouth
  • Formula Tube Intake: 600 mL Pediasure/day
  • Medication Intake: Albuterol, Prevacid, Ferritin
  • Height: 39.5"
  • Weight: 25 lbs

Our Super Heroes

Our Super Heroes
Batman and Robin - Halloween 2011

Henry

Henry
The Best Big Brother Ever!

Mason

Mason
Dressed as Robin for Halloween... the hat adds a nice Elmer Fudd twist to his look.

Blog Archive

  • ▼  2013 (1)
    • ▼  June (1)
      • On our way back to the "City of Hope"
  • ►  2012 (8)
    • ►  December (1)
    • ►  June (1)
    • ►  May (1)
    • ►  April (1)
    • ►  March (1)
    • ►  February (3)

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