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Raising Darus

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Navigating the Waters of Phelan McDermid Syndrome

NAVIGATING THE WATERS OF PHELAN MCDERMID SYNDROME

Raising Darus

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Darus & Luana visit Universal Studios!

January 3, 2018 Abby Lievense

Darus is very fortunate to have such a loving, fun & patient caregiver, Luana.  She takes him on all sorts of adventures!  Today they went to Universal Studios in Hollywood!

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← Hiking and then to Verizon StoreDonuts Interrupted →
  • May 2018
    • May 11, 2018 Front Tooth - There it was, Gone! May 11, 2018
    • May 7, 2018 Weekend Update May 7, 2018
  • April 2018
    • Apr 8, 2018 Riding a Bicycle Apr 8, 2018
    • Apr 7, 2018 Food Snacks Pretzels Apr 7, 2018
  • March 2018
    • Mar 20, 2018 Lamictal Mar 20, 2018
    • Mar 18, 2018 Inquisitive D Mar 18, 2018
  • February 2018
    • Feb 18, 2018 Sweet Sleepy Boy Feb 18, 2018
    • Feb 2, 2018 Discover SPARK Feb 2, 2018
  • January 2018
    • Jan 20, 2018 Women's March 2018 Jan 20, 2018
    • Jan 7, 2018 Hiking and then to Verizon Store Jan 7, 2018
    • Jan 3, 2018 Darus & Luana visit Universal Studios! Jan 3, 2018
  • December 2017
    • Dec 13, 2017 Donuts Interrupted Dec 13, 2017
  • September 2017
    • Sep 21, 2017 Physical Therapy Evaluation Sep 21, 2017
    • Sep 20, 2017 Books! Sep 20, 2017
    • Sep 10, 2017 Hiking Camp Josepho Sep 10, 2017
  • August 2017
    • Aug 29, 2017 Sleep Disturbances Aug 29, 2017
    • Aug 15, 2017 First Day of First Grade Aug 15, 2017
  • May 2017
    • May 27, 2017 "French Fries" May 27, 2017
  • April 2017
    • Apr 2, 2017 Joint Attention Apr 2, 2017
  • March 2017
    • Mar 6, 2017 Joining the PMSF Board of Directors Mar 6, 2017
  • February 2017
    • Feb 28, 2017 Parents want to give their autistic children a voice in schools, but scientists call their technique ‘false hope’ Feb 28, 2017
    • Feb 26, 2017 Say NO to House Bill 610 Feb 26, 2017
    • Feb 15, 2017 MRI of the Brain Feb 15, 2017
  • January 2017
    • Jan 6, 2017 Research Study at UT-Southwestern Jan 6, 2017
  • November 2016
    • Nov 20, 2016 Camp Josepho Hike Nov 20, 2016
    • Nov 18, 2016 Apple Boy Nov 18, 2016
    • Nov 5, 2016 Unlocking Knowledge Nov 5, 2016
    • Nov 3, 2016 Teaching Acceptance Nov 3, 2016
  • October 2016
    • Oct 1, 2016 Secrets of Being a Special Needs Parent Oct 1, 2016
  • September 2016
    • Sep 28, 2016 Clinical Trial at UT Southwestern - Biomarkers associated with Phelan-McDermid (22q13) Syndrome Sep 28, 2016
    • Sep 24, 2016 Global Genes Summit Sep 24, 2016
    • Sep 11, 2016 EEG Results Sep 11, 2016
    • Sep 9, 2016 2nd 24-Hour V-EEG Sep 9, 2016
    • Sep 8, 2016 2016 PMSF 24 Hour Giving Challenge Sep 8, 2016
    • Sep 3, 2016 Traveling Emily from the UK Sep 3, 2016
  • August 2016
    • Aug 22, 2016 Caroline's Cart Aug 22, 2016
    • Aug 18, 2016 "Momomom" Aug 18, 2016
    • Aug 16, 2016 First Day of Kindergarten Aug 16, 2016
    • Aug 10, 2016 Introducing our Kids to their Classmates Aug 10, 2016
  • June 2016
    • Jun 28, 2016 Project Believe by Karen Haberberg Jun 28, 2016
    • Jun 22, 2016 Pitt-Hopkins Syndrome Jun 22, 2016
    • Jun 20, 2016 Stanford Research Study Jun 20, 2016
  • May 2016
    • May 24, 2016 Grieving for a Child I haven't Lost May 24, 2016
    • May 23, 2016 Why Genetic Testing? Why Not?! May 23, 2016
  • April 2016
    • Apr 30, 2016 Garbage Trucks! Apr 30, 2016
    • Apr 26, 2016 Mountains instead of the Beach Apr 26, 2016
    • Apr 24, 2016 Basketball Darus Apr 24, 2016
    • Apr 23, 2016 Wuana's Car Apr 23, 2016
    • Apr 21, 2016 Potter the Kitty Apr 21, 2016
    • Apr 17, 2016 PMS Bites Apr 17, 2016
    • Apr 13, 2016 Body Sock Darus Apr 13, 2016
    • Apr 10, 2016 Cabrillo Marine Aquarium & Tide Pools Apr 10, 2016
  • March 2016
    • Mar 31, 2016 Fun with a Friend at the Redondo Pier Mar 31, 2016
    • Mar 20, 2016 Darus' Language Inventory Mar 20, 2016
    • Mar 17, 2016 Phelan Lucky Mar 17, 2016
  • February 2016
    • Feb 4, 2016 Swimming Lessons Feb 4, 2016
    • Feb 2, 2016 Music Therapy Feb 2, 2016
  • January 2016
    • Jan 12, 2016 Autism 'Reversed' ... in Mice Jan 12, 2016
  • December 2015
    • Dec 14, 2015 The Holiday Note I'd Like to Mail to Everyone on My List Dec 14, 2015
    • Dec 9, 2015 Ice Cream Boy Dec 9, 2015
    • Dec 2, 2015 Fatalities Confirmed in San Bernardino Shooting Dec 2, 2015
    • Dec 2, 2015 Mustard Boy Dec 2, 2015
  • November 2015
    • Nov 18, 2015 Living With a Rare Genetic Disorder - Bethesda Magazine Nov 18, 2015
    • Nov 16, 2015 Research Nov 16, 2015
    • Nov 10, 2015 Dear Teacher: Heartfelt Advice for Teachers from Students Nov 10, 2015
  • October 2015
    • Oct 27, 2015 Homeschooling Oct 27, 2015
  • September 2015
    • Sep 27, 2015 Hi from the Friendly Skies Sep 27, 2015
    • Sep 24, 2015 Laughing D Sep 24, 2015
    • Sep 20, 2015 Punker in the Bunker Sep 20, 2015
    • Sep 15, 2015 IEP Meeting Sep 15, 2015
    • Sep 6, 2015 Limit Tester Sep 6, 2015
  • August 2015
    • Aug 14, 2015 A Very Curious Punky Aug 14, 2015
    • Aug 10, 2015 Happy 5th Bday Aug 10, 2015
  • July 2015
    • Jul 26, 2015 Trip to the Midwest Jul 26, 2015
    • Jul 15, 2015 A Note from School Jul 15, 2015
    • Jul 13, 2015 Meeting w/ our New Geneticist Jul 13, 2015
    • Jul 3, 2015 Alternative Treatment & Therapies Jul 3, 2015
  • June 2015
    • Jun 28, 2015 A day at the pier... Jun 28, 2015
    • Jun 18, 2015 Neurology Appointment Jun 18, 2015
    • Jun 12, 2015 The Only Constant is Change Jun 12, 2015
    • Jun 12, 2015 Basketball Darus Jun 12, 2015
    • Jun 11, 2015 Option C Jun 11, 2015
  • May 2015
    • May 31, 2015 Fun at Coastline Beach May 31, 2015
    • May 24, 2015 Fun at the San Pedro Embarcadero May 24, 2015
    • May 24, 2015 Happiest Boy on the Block May 24, 2015
    • May 22, 2015 Visiting the Getty Center May 22, 2015
    • May 18, 2015 Saying good bye to a Classmate May 18, 2015
    • May 16, 2015 Darus had so much Fun! May 16, 2015
    • May 15, 2015 "Just Let Me Play with the Lids" May 15, 2015
    • May 14, 2015 Oxytocin sales into trials for Phelan McDermid Syndrome May 14, 2015
    • May 9, 2015 Business Cards May 9, 2015
    • May 2, 2015 Beach Day May 2, 2015
  • April 2015
    • Apr 25, 2015 Cabrillo Marine Aquarium - San Pedro - Point Fermin Apr 25, 2015
    • Apr 23, 2015 Boardwalk Games Apr 23, 2015
    • Apr 21, 2015 Fecal Smearing Apr 21, 2015
    • Apr 21, 2015 Internal Compass Apr 21, 2015
    • Apr 20, 2015 "I want cartoon!" Apr 20, 2015
    • Apr 10, 2015 Soccer Apr 10, 2015
    • Apr 7, 2015 It Takes a Village - Disneyland Apr 7, 2015
    • Apr 3, 2015 Psychiatrist Apr 3, 2015
    • Apr 3, 2015 Echocardiogram & EKG Apr 3, 2015
    • Apr 2, 2015 Neuro Ophthalmologist Apr 2, 2015
    • Apr 2, 2015 Lila Hilker Takes on Life with a Smile! Apr 2, 2015
    • Apr 1, 2015 Endocrinologist Apr 1, 2015
  • March 2015
    • Mar 31, 2015 Haircut - On His Own Accord Mar 31, 2015
    • Mar 26, 2015 Darus Loves the Bunny Mar 26, 2015
    • Mar 2, 2015 Emergency Room Line Jumpers are the Worst Mar 2, 2015
    • Mar 1, 2015 Phelan Lucky Mar 1, 2015
  • February 2015
    • Feb 17, 2015 Another Brave Post from The Mighty Feb 17, 2015
    • Feb 9, 2015 Genetic Doesn't Necessarily Mean Hereditary Feb 9, 2015
    • Feb 7, 2015 What did you do this morning? Feb 7, 2015
  • January 2015
    • Jan 30, 2015 Judging Eyes & Condescending Sighs Jan 30, 2015
  • December 2014
    • Dec 10, 2014 Medical Marijuana Dec 10, 2014
    • Dec 10, 2014 Things That Darus Loves Dec 10, 2014
    • Dec 10, 2014 Challenges at School Dec 10, 2014
  • November 2014
    • Nov 26, 2014 Giving Thanks Nov 26, 2014
  • October 2014
    • Oct 29, 2014 Whole Exome Sequencing Oct 29, 2014
    • Oct 22, 2014 Pro Au Pair Oct 22, 2014
    • Oct 18, 2014 24-Hour EEG Oct 18, 2014
    • Oct 17, 2014 Seaver Autism Center at Mount Sinai Medical School in NYC Oct 17, 2014
    • Oct 15, 2014 Hypotonia Oct 15, 2014
    • Oct 14, 2014 Receiving a Prenatal Downs Syndrome dx - What One Couple Did Oct 14, 2014
    • Oct 14, 2014 Could a Cure be on the Horizon? Oct 14, 2014
    • Oct 13, 2014 AAC Evaluation Oct 13, 2014
    • Oct 9, 2014 Nighttime Waking Oct 9, 2014
    • Oct 9, 2014 Pull-Ups Oct 9, 2014
    • Oct 8, 2014 Journal of Neurodevelopmental Disorders - Spotlight on P-MS Oct 8, 2014
    • Oct 8, 2014 Phelan-McD​ermid Syndrome part of the NIH-Funded Rare Diseases Consortium Oct 8, 2014
  • September 2014
    • Sep 30, 2014 Welcome to Holland Sep 30, 2014
    • Sep 29, 2014 The Day of the Diagnosis Sep 29, 2014

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