March 24th, 2014
Weight 18 lbs
Height 25.6 in
Creon: 14 (6000 mg) pills a day
Growth Status
Green: Low or No Risk
Weight: Gained 24.3 ounces (expected weight gain is 20-30 ounces)
Height: Grew 1.3 inches (expected height gain is .9-3.5 inches)
Medications per day
Salt 1/4 tsp
Pulmozyme 1 Vial nebulized daily
Creon 14 (6000 mg) capsules a day
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
- Back to green light! Evan's weight gain is excellent! His height is a bit concerning at this point, but we are going to say it's measurement error at this point and keep monitoring it.
- Evan cannot be around fires, hot tubs, or onion fields. All are bad for his lungs. And he should only swim in pools that are chemically treated and well taken care of.
- Evan could possibly qualify for studies at age 2 if VX809 is out by then. VX809 coupled with kalydeco is showing improvements in lung function so far in people with Evan's mutation.
- Discussed continuing to increase the fats in Evan's solids with the nutritionist.
- Meet Dr Asfour - Evan's Pediatric Pulmonologist
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