http://www.candicelange.com/ Making Connections. Finding Solutions.™ en Copyright 2010 Tue, 22 Jun 2010 16:35:00 -0500 http://www.sixapart.com/movabletype/ http://blogs.law.harvard.edu/tech/rss lodge.mark@hotmail.com You may write to Bridget directly if related to Pachygyria. Thank you. ]]> http://www.candicelange.com/2010/06/mary.html http://www.candicelange.com/2010/06/mary.html Pachygyria Family Stories Tue, 22 Jun 2010 16:35:00 -0500 Candice@sophtware.com ----------------------------------------------------------- Trace Rich Birthday 12/08 Mom: Justina, Middleburg, Florida http://www.tracesracewithliss.webs.com justina_rich@yahoo.com ----------------------------------------------------------- Jake Hutchens Birthday 2/26/07 Diagnosis: lissencephaly, Pachygyria, Isolated Lissencephaly Sequence Mom: Jaci Robinson-Hutchens 117 Edgewood Drive Bedford, Indiana 47421 812-675-8837 http://jakehutchens.webs.com/ ----------------------------------------------------------- Tabatha Huckeba for Travis - Birthday 2001 Please visit the link below: 1. Go to www.carepages.com 2. Click "Visit a CarePage" 3. Register (first-time users only) 4. After you've registered, enter the exact CarePage Name: TravisHuckebasCarePage (no spaces) 803-325-1644 2709 Harmony Rd., Rock Hill, SC 29730 thuckeba@aol.com ----------------------------------------------------------- Krista Karp for Jenna - Birthday 2004 Europe (2009 - possible perisylvian syndrome instead) doublemomATgmailDOTcom (take out the AT and the DOT and put in @ and . ) ----------------------------------------------------------- Amy Branaugh for Grant - Birthday 2009 Nebraska amybranaugh@hotmail.com ----------------------------------------------------------- Bridget Lodge for Mary - Birthday 2002 California 2010 Diagnosis changed to Bilateral Perisylvian Polymicrogyria with Worster-Drought Syndrome. 2008 diagnosis Pachygyria lodge.mark@hotmail.com ----------------------------------------------------------- Jessica Drake for Mason - Birthday 2008 New York sissyca@yahoo.com ]]> http://www.candicelange.com/2010/06/pachygyria_family_contacts.html http://www.candicelange.com/2010/06/pachygyria_family_contacts.html Pachygyria Family Contacts Tue, 22 Jun 2010 08:48:29 -0500 You will enjoy the new insights that Rick Warren has, with his wife now having cancer and him having 'wealth' from the book sales. This is an absolutely incredible short interview with Rick Warren, 'Purpose Driven Life ' author and pastor of Saddleback Church in California . In the interview by Paul Bradshaw with Rick Warren, Rick said: People ask me, What is the purpose of life? And I respond: In a nutshell, life is preparation for eternity. We were not made to last forever, and God wants us to be with Him in Heaven. One day my heart is going to stop, and that will be the end of my body-- but not the end of me. I may live 60 to 100 years on earth, but I am going to spend trillions of years in eternity. This is the warm-up act - the dress rehearsal. God wants us to practice on earth what we will do forever in eternity.. We were made by God and for God, and until you figure that out, life isn't going to make sense. Life is a series of problems: Either you are in one now, you're just coming out of one, or you're getting ready to go into another one. The reason for this is that God is more interested in your character than your comfort; God is more interested in making your life holy than He is in making your life happy. We can be reasonably happy here on earth, but that's not the goal of life. The goal is to grow in character, in Christ likeness. This past year has been the greatest year of my life but also the toughest, with my wife, Kay, getting cancer. I used to think that life was hills and valleys - you go through a dark time, then you go to the mountaintop, back and forth. I don't believe that anymore. Rather than life being hills and valleys, I believe that it's kind of like two rails on a railroad track, and at all times you have something good and something bad in your life.. No matter how good things are in your life, there is always something bad that needs to be worked on. And no matter how bad things are in your life, there is always something good you can thank God for. http://www.candicelange.com/2010/06/rick_warrens_message_on_life.html http://www.candicelange.com/2010/06/rick_warrens_message_on_life.html Motivational Stories and Sayings Fri, 04 Jun 2010 07:19:37 -0500 www.heartofsailing.org info@heartofsailing.org For locations including 3 in Georgia: http://www.heartofsailing.org/locations.asp]]> http://www.candicelange.com/2010/05/heart_of_sailing_special_needs_nautical_adventure.html http://www.candicelange.com/2010/05/heart_of_sailing_special_needs_nautical_adventure.html Activities, Events & Special Needs Groups Tue, 25 May 2010 20:55:26 -0500 www.autismontheseas.com 800-516-5247 ]]> http://www.candicelange.com/2010/05/autism_on_the_seascom.html http://www.candicelange.com/2010/05/autism_on_the_seascom.html Activities, Events & Special Needs Groups Tue, 25 May 2010 16:10:59 -0500 United Health Care - UHC Children's Fund http:/www.uhccf.org/apply.html Kiddos Closet www.kiddosclubhousefoundation.org Electric Company Your local company may offer a scholarship program if you are a subscriber to their service. Example: Rockdale County - Snapping Shoals Electric Company offers up to $2500 for therapy services. Jackson County EMC - Operation Round Up Easter Seals Champions for Children For any child that has been denied Katie Beckett Deeming Waiver. www.championsforchildrenga.org Brain and Spinal Injury Trust Fund Commission Keisha 404-656-5929 or 404-463-9487]]> http://www.candicelange.com/2010/05/scholarship_programs.html http://www.candicelange.com/2010/05/scholarship_programs.html Resources Tue, 25 May 2010 14:53:24 -0500 Great adventures: Camp helps kids, adults with disabilities Posted: 7:50 PM Apr 6, 2010 Reporter: By Deanna Allen, Staff Writer for Gwinnett Daily Post Email Address: deanna.allen@gwinnettdailypost.com LAWRENCEVILLE — A small group of campers will travel south from Gwinnett to the Okefenokee Swamp this weekend looking for adventure. Led by volunteers with the small, nonprofit organization Camp Caglewood, the campers — children and adults with developmental disabilities — will experience the great outdoors while learning to be more independent and having some fun away from home. ]]> http://www.candicelange.com/2010/04/camp_caglewood.html http://www.candicelange.com/2010/04/camp_caglewood.html Activities, Events & Special Needs Groups Thu, 08 Apr 2010 07:54:09 -0500 SAGE SCHOOL 1450 Pine Road, Dacula, GA 30019 Office: 678-907-4194 Fax: 678-348-7380 www.sageschool.net info@sageschool.net Sage School is a unique Christian school, dedicated to meet the needs of the student with language based learning differences, including Dyslexia, difficulty understanding and/or using spoken language, written language disorders, and mathematical difficulties. Please see their website for further information. ]]> http://www.candicelange.com/2010/03/dyslexia_school.html http://www.candicelange.com/2010/03/dyslexia_school.html Resources Tue, 23 Mar 2010 21:18:30 -0500 http://www.biernathlaw.com/ 12pm - 1pm: Open Discussion for Support Join us at Duncan Creek Elementary 4500 Braselton Highway - Hwy.124 Hoschton GA 30548 RM 1.126 (IEP meeting room) The support group is open to all families who have children with any special needs. Refreshments are provided and a warm group of parents to support you. First Wednesday of the Month* January 6, February 10 (2nd Wed), March 3, April 14 (2nd Wed) Bring your Lunch if you like between 11am - 1pm For more information and RSVP, please contact: Candice Lange 678-714-9447 Candice@sophtware.com or Heidi Sawyer 770-962-7320 Heidisawyer1@yahoo.com --------------------------------------------------- Grupo de Apoyo para Estudiantes con Necesidades Especiales Participa con nosotros en Duncan Creek E.S. Primer Miercoles de cada mes / (Segundo Miercoles**) Enero 6, Febrero 10**, Marzo 3, Abril 14** Trae tu almuerzo: 11:00 am a 1:00 pm Para Información & Reservación en Español: Rosa Delp 678-546-0664 delprosany@aol.com ]]> http://www.candicelange.com/2010/03/special_needs_support_group_north_gwinnett.html http://www.candicelange.com/2010/03/special_needs_support_group_north_gwinnett.html Activities, Events & Special Needs Groups Tue, 23 Mar 2010 10:42:18 -0500 How big is your box filled with IEPs, IFSPs, doctor’s notes, test copies, samples of work and more? This morning I finally finished a long overdue project that was sitting by my desk for months. I had this big box of papers in binders that no longer fit in my new craft closet. It was time to move on. Corey is in 5th grade this year with a wonderful teacher, parapro and friends. This is his last year of elementary school. I don't know what next year will bring but I know looking back at all these papers that no matter what happens we'll get through it. There were so many battles fought in the past years. Most we won but some we are still working to win. I started to write about the struggles and triumphs through the years but deleted them knowing you knew them all too well with your own story. Going through the papers was like a rite of passage. It was a release and literal discard of issues that no longer matter and keeping those that did. It was a “pat on the back” saying good job for all the hard work that led to where we are today. It was amazing to see how far we have come with the school system and medical field, from difficult times to rewarding times. It was a scrapbook of all the people we have met through the years. The friends we have made, the helpers that lifted us up, the ones that challenged us, and the ones that taught us. From a large box and many binders came many emotions. Now it is neatly reduced to one large binder and sits quietly on a shelf. http://www.candicelange.com/2010/03/moving_on.html http://www.candicelange.com/2010/03/moving_on.html Keeping Records Mon, 22 Mar 2010 06:45:33 -0500 www.wondercolorsartstudio.com]]> http://www.candicelange.com/2010/02/art_lessons_for_children_with_special_needs.html http://www.candicelange.com/2010/02/art_lessons_for_children_with_special_needs.html Activities, Events & Special Needs Groups Mon, 01 Feb 2010 08:16:41 -0500 Dr. Dobyn's research lab tested the TUBA1A gene (previous name TUBA3) with normal results. He also came across a couple “cousin” genes that he will try to get tested in another round. This is a genetic test for Lissencephaly and pachygyria. http://www.candicelange.com/2009/12/coreys_4th_genetic_test_by_dr_dobyns_research.html http://www.candicelange.com/2009/12/coreys_4th_genetic_test_by_dr_dobyns_research.html Brain Malformation - Mild Lissencephaly - PACHYGYRIA Mon, 14 Dec 2009 21:49:35 -0500 http://www.uchospitals.edu/physicians/william-dobyns.html. On December 7, 2009, Dr. Dobyns emailed me back with this current information. Lifespan: For the classic, severe form of LIS, by age 10y about half are deceased and probably 10-20% live to age 20 years. The first 10 years are variable, sometimes hard and sometimes not. The 2nd decade gets much harder, and probably the next decade would be harder still but very few are still living. The oldest known patient with the severe classic form of LIS lived to about age 28-29 years. Children and adults with mild forms of lissencephaly may live much longer, and may even have a normal lifespan. In general, the less severe the developmental handicap and epilepsy, the longer the affected person is likely to live. Ketogenic diet works depending on the individual child and their types of seizures. Hyperbaric oxygen chamber therapy does not work for Lissencephaly - Pachygyria. Dr. Dobyns said hyperbaric is more effective for treating newly injured or dying tissue/nerves, and won't regenerate what is not there. Finally, the GRADE of LIS and the TYPE of LIS are different. I used to classify LIS as “type 1” (isolated LIS, Miller-Dieker syndrome and related) or “type 2” (Walker-Warburg syndrome and related). Then other docs began writing about a “type 3” and then “type 4”. But the conditions they labeled as type 3 and 4 were basically not LIS at all. So I stopped using type 1 and 2 and use descriptors instead: type 1 is now “classic” LIS, and type 2 is “cobblestone” malformation or LIS. I still use numbers for the severity or GRADE of LIS, at least for for kids with classic type of LIS. In this system, type 1 is the most severe, type 2 almost the same as type 1, and types 3 and 4 less severe. Types 5-6 are confusing, and refer to LIS with so-called band heterotopia. Great Suggestion: It is not unusual for parents to get most of the information exactly right, then mix up one or two phrases that end up making a huge difference. This is why Dr. Dobyns routinely allow parents to run tape recorders in clinic if they want.]]> http://www.candicelange.com/2009/12/_for_the_classic_severe.html http://www.candicelange.com/2009/12/_for_the_classic_severe.html Brain Malformation - Mild Lissencephaly - PACHYGYRIA Sat, 12 Dec 2009 10:42:54 -0500 www.younglife.org/Capernaum ]]> http://www.candicelange.com/2009/12/special_needs_camp.html http://www.candicelange.com/2009/12/special_needs_camp.html Activities, Events & Special Needs Groups Sat, 12 Dec 2009 06:34:51 -0500 www.stjosephsatlanta.org.]]> http://www.candicelange.com/2009/12/free_pediatric_services_free_doctor_dentist_and_im.html http://www.candicelange.com/2009/12/free_pediatric_services_free_doctor_dentist_and_im.html Resources Thu, 10 Dec 2009 06:39:38 -0500