Sunday, June 29, 2014

Evan Primary's 8 Month

MAY 5TH, 2014

Weight 18 lbs 12 oz
Height 26.5 in
Creon: 17.5 (6000 mg) pills a day

Growth Status
Green: Low or No Risk
Weight:  Gained 8.6 ounces (expected weight gain is 10-15 ounces per month)
Height: Grew 2.17 inches (expected height gain is 1.5-5.6 inches)




Medications per day
Salt               1/2 tsp
Pulmozyme  1 Vial nebulized daily
Creon            14 (6000 mg) capsules a day
Albuterol        2 Puffs morning and night
AquDEKs      1 mL 
Synagis         1 mL once a day every 30 days




Tidbits



  • Evan should have gained at least 10 ounces between this visit and our last.  He gained 8.6.  For Evan, every ounce counts.  We discussed ways to continue to increase Evan's caloric intake including new recipes for toddler muffins, different ways to add fats to his food, and healthy fats.  
  • Promising results so far for VX809.  VX809 coupled with kalydeco is showing improvements in lung function so far in people with Evan's mutation.
  • Learned that it doesn't matter the order of the CPT as long as hit all the spots. 

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