May is Prader-Willi Syndrome Awareness Month!

May is here (already!) and it's Prader-Willi Awareness month! Get involved! We are spreading the word about PWS throughout the month of May and trying to get others to do the same. Foundation for Prader Willi Research (FPWR) has created this event in order to spread awareness in creative ways. Read more about how you can participate here--it's easy and fun! For the month, we'll be giving up WINE, as you know something we can hardly go a day without! It'll be quite the challenge, but if it's in the name of PWS Awareness month,...

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Look at those eyes!

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It's been awhile!

Long time since a post, we found it too difficult to keep up with updating all of her appointments! So, just a quick update on how Siena is doing today. She no longer has her feeding tube, and is able to (with some challenges) eat all of her food by bottle! Siena is now finally on Growth Hormone (GH) therapy, which has been helping out a great deal with her low muscle tone. She has some work to do with her core strength before she begins sitting on her own, but she's getting there! Her head control is miles better than it was a month ago. We're hopefully going to start planning a local "One Small Step" walk for this year...

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Early Intervention Visit

Siena had her third Early Intervention visit today! The Occupational Therapist noticed great improvements in Siena's head control and overall movement. The OT showed us some different exercises to perform: joint compressions and a new way to do "tummy time." She mentioned that another very important thing to do starting at this age is infant massage. She is enlisting the help of a Physical Therapist to start sessions on our next visit to teach us massage techniques. A nutritionist will also join the group to talk about Siena's feeding habits, calorie intake, and weight check. So far Siena is growing gradually and, even though...

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First Endocrine Visit: Growth Hormone Here We Come!

The long awaited appointment with Siena's endocrinologist, Dr. Diane Stafford, of Boston Children's Hospital, finally came today! We were a bit anxious for this meeting for a couple reasons. First, we want to get Siena started with Growth Hormone as soon as possible. Second, we didn't know where this doctor stood on the concept of early application of growth hormone. We hear from many families that they had trouble getting their endocrinologists to buy in to the idea of starting growth hormone. We feel it's a lack of awareness of all the great research findings that are going on right now. Dr. Stafford specializes in Prader...

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First Early Intervention Visit!

Siena had her first appointment with Early Intervention today! Her Occupational Therapist (OT) is wonderful and has years of experience with children that have PWS. This first visit is mainly for Siena's primary evaluation of her motor skills, muscle tone, and social ability. She passed a multitude of tests with flying colors--something we didn't expect! She does have some things to work on, including lower tone in her upper body (specifically with head control and her arms). She took very well to her Boppy pillow during "tummy time." We'll be using this as a way to build her strength in her legs and shoulders in the upcoming...

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