PWS Awareness 2014: Day #5

8:45am – Speech Therapy
11am – Special Instruction

“In the first stage, infants with PWS are hypotonic or “floppy”, with very low muscle tone. Weak cry and a poor suck reflex are typical. Babies with PWS usually are unable to breastfeed and frequently require tube feeding. These infants may suffer from “failure to thrive” if feeding difficulties are not carefully monitored and treated. As these children grow older, strength and muscle tone generally improve. Motor milestones are achieved, but are usually delayed”.

Low muscle tone has been Siena’s major PWS obstacle to date.  Siena was tube fed for the first three months of life.  While she learned to drink from a bottle, it would sometimes take an hour to feed her 2 ounces of milk.   Along with her team of therapists, we had to teach Siena how to sit and crawl, something that usually comes quite naturally to most babies.  At 22 months Siena began to walk, and is now working on running and jumping.  Siena’s speech has been very delayed and something she works very hard on, attending speech therapy 3 times a week.  We look forward to the day that Siena can clearly communicate everything that is going on in that smart little noggin of hers 🙂


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