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ABOUT AMANDA

Amanda

Amanda was born August 10 2010. When she was born she had some trouble breathing but after a few hours was perfectly healthy. At her one month check up her pediatrician noticed she was a bit floppy and recommended stimulation. When she was 6 weeks old we took her again to the Dr. and this …

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Amanda's Diet

There are many nutrition issues associated with SMA Type 1 kids.  They can’t go without food for more that 4 hours because they have decreased lean body mass that becomes even more affected after long periods of fasting (this means we have to feed her overnight).  They do not tolerate large amounts of food at …

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Amanda's Equipment

Amanda needs various machines daily that have helped to keep her relatively healthy: BiPAP (Bi-level Positive Air Pressure): Amanda uses BiPAP while she sleeps at night and naps.  The reason for using it while she sleeps is that during sleep the body is relaxed and her breathing muscles might not work like they usually do …

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Amanda's favorite things

I will add to this page as Amanda keeps growing. – 8 months old, she likes: Baby TV is her favorite thing. Being held is probably her second favorite thing. Swinging in the swings. Her doll Ivana. She likes being read books, they can’t have more than 2-3 lines per page because she gets bored! …

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Amanda's Schedule

Amanda’s schedule varies from time to time, but currently her day goes like this: 7:30am > Wakes up and requests the TV 8:00-9:00 am > Respiratory Therapy: Nebulization with saline and albuterol 3 sets of 4 breaths of Cough Assist and suction after each set 15 mins of CPT (Chest Physiotherapy) 3 sets of 4 …

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