divingintothewaves.blogspot.com
Diving Into the Waves: About Us
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PWS Resources and Treatments. At 3 weeks old, Dean was diagnosed with a rare genetic disorder called Prader-Willi syndrome (PWS). This is a life-threatening condition for which there is currently no cure and affects approximately 1 in 15,000. Please visit the site of the Foundation for Prader-Willi Research. For more information and to donate towards finding a cure for our loved ones! Subscribe to: Posts (Atom). Me, in a nutshell. View my complete profile. Seek and ye shall find. Fave blogs and sites.
divingintothewaves.blogspot.com
Diving Into the Waves: We're Back! A Review of Leg 1 of the Trip...
http://divingintothewaves.blogspot.com/2013/07/were-back-review-of-leg-1-of-trip.html
PWS Resources and Treatments. Saturday, July 6, 2013. A Review of Leg 1 of the Trip. I know, many of you didn't know we were away. I figured that even without having my address on here, it's kind of weird to say, "Hey, we're going away for 8 days, so our house is free game! So now you know we're back. :). We had a wonderful, surprisingly *actually relaxing* vacation, starting here in Richmond, VA, and making stops in Pawley's Island, SC; Gainesville, FL; Orlando, FL; Savannah, GA; and back to Richmond!
divingintothewaves.blogspot.com
Diving Into the Waves: Guest promo - the roo pouch
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PWS Resources and Treatments. Monday, September 16, 2013. Guest promo - the roo pouch. I love supporting fellow PWS families and so wanted to. Pass along this opportunity to support Rebecca and her. My name is Rebecca - Mamma to Joey Paul (2 1/2),. And Emil Franklin (6 months). My son Joey has PWS. Last. To Indiana because my PhD. After working at the University of Delaware for. Decided to capitalize on this new adventure and stay home. With my boys. For the last two years I have enjoyed exploring. Sorry...
divingintothewaves.blogspot.com
Diving Into the Waves: PWS Resources and Treatments
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PWS Resources and Treatments. PWS Resources and Treatments. There is no cure for PWS (yet! Tev-Tropin (growth hormone) - 0.8 mg/day. Carnitor (Levocarnitine) - 700 mg/day. Nasonex - 1 spray per nostril/day. Pulmicort - 1x/day (2-3x/day during respiratory illness). Levothyroxine - 12.5 mcg/day. Modafinil - 50 mg/day. Montelukast (Singulair) - 1 tablet/day. PharmaNAC - 450 mg (1/2 tablet)/day. Vitamin B12 (cyanocobalamin form) injections - 1,000 mcg/2 weeks. Fish oil - 1 Coromega packet/day. Me and my house.
divingintothewaves.blogspot.com
Diving Into the Waves: Disclosure
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PWS Resources and Treatments. This policy is valid from 15 April 2011. This blog is a personal blog written and edited by me. For questions about this blog, please contact Ali Shenk (acfshenk at gmail dot com). This blog accepts forms of cash advertising, sponsorship, paid insertions or other forms of compensation. To get your own policy, go to http:/ www.disclosurepolicy.org. Subscribe to: Posts (Atom). Me, in a nutshell. View my complete profile. Seek and ye shall find. Fave blogs and sites. Prader-Wil...
divingintothewaves.blogspot.com
Diving Into the Waves: PWS Glossary
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PWS Resources and Treatments. This is a(n incomplete) list of terms and abbreviations as they apply to Prader-Willi syndrome, with links as appropriate. Please feel free to. Contact Ali and submit more entries! Aspiration (or pulmonary aspiration). See Central Adrenal Insufficiency. An amino acid used in fatty acid metabolism that many individuals with PWS take in supplement form (typically either carnitor/levocarnitine or carnitine fumarate). A subtype of PWS in which the PWS critical region on the pate...
divingintothewaves.blogspot.com
Diving Into the Waves: Happy Birthday, Coley!
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PWS Resources and Treatments. Saturday, August 17, 2013. Happy Birthday, Coley! Today, our Coley turns 6! It's been a very full six years, and we are so proud of him. :). Dear God, thank you for Cole and how he made us a family. Thank you for his curiosity, his energy, his life, his humor, and his love for his family and friends. We pray that you would bless him richly and give him confidence and greater faith in you. He is a special treasure. Amen. Subscribe to: Post Comments (Atom). Me, in a nutshell.
divingintothewaves.blogspot.com
Diving Into the Waves: Yes, I Pushed my Kid Down the Water Slide
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PWS Resources and Treatments. Sunday, August 2, 2015. Yes, I Pushed my Kid Down the Water Slide. 8221; and flipped onto his belly while he white-knuckled the sides of the slide. I pulled him back up to turn him on his bottom (I’m not so mean to shove him down while facing backward on his belly), and told him, “No, you’re going down” and pushed him (not HARD) down the slide. Guess what? He came up out of the water and was smiling and cheering, remembering how much fun it really was. My son was safe. M...
divingintothewaves.blogspot.com
Diving Into the Waves: School is a-Comin'
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PWS Resources and Treatments. Saturday, August 31, 2013. Held at our church and the rhythm of getting him there and back reminded me of how busy the school year really is. Definite highlights were our Florida trip. Weekends to visit family in northern VA and Maryland, and Cole's birthday. It makes me smile to think of these memories. And everyone seems to be craving more structure. So, although I'll miss the boys, I'm embracing the new school year. I want to keep him small forever. Last year, Dean. Ali, ...
divingintothewaves.blogspot.com
Diving Into the Waves: The Namesake Post
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PWS Resources and Treatments. Originally published on February 6, 2010:. See information about when this article was published in Parenting Special Needs Magazine here: http:/ divingintothewaves.blogspot.com/2012/04/magazine-feature.html. Subscribe to: Posts (Atom). Me, in a nutshell. View my complete profile. Seek and ye shall find. Fave blogs and sites. Enjoying the Small Things. Dream Team Link Share #127. Amazing Adventures of Ayden Jane. Me and my house. Cystic Fibrosis:We're Learning As We Go.
