tag:www.candicelange.com,2010://1 2010-06-22T20:37:56Z Making Connections. Finding Solutions.™ Movable Type 3.32 tag:www.candicelange.com,2009://1.385 2010-06-22T21:35:00Z 2010-06-22T20:37:56Z

2010 Update: Recently upgraded and different diagnosis -Bilateral Perisylvian Polymicrogyria with Worster-Drought Syndrome. Finally, everything is coming together, and it makes sense. She still has some issues with eating and weight gain, but we are making progress. Speech and eating...

lodge.mark@hotmail.com You may write to Bridget directly if related to Pachygyria. Thank you. ]]> Mary's previous and current diagnoses up to 5/2009: Global Development Delays (previous and current) Jaundice (previous) Left lower extremity hemiparesis (previous and current) Right upper extremity hemiparesis (previous and current) Hypotonia throughout body (previous and current) Torticollis of the neck (previous until I adjusted it-I am a chiropractor) Hyperextensive joints (previous and current) High arched palate Dental cavities, as Mary was unable to open her mouth fully (previous-currently, she has been able to open her mouth better) Feeding difficulties complicated by decreased tongue movements, overall oral motor weakness/hypotonia, tight jaw muscles and ligaments, oropharyngeal weakness, poor coordination of swallowing, and no rotary chewing movements. This diagnosis is current, however, she has done much better, especially in the last year with her feeding. We had a feeding specialist/therapist who really helped her out. We are using tongue depressors stacked together to stretch out her jaw area, as she was unable to open her mouth previously. When she was a baby, I used to take the rubber tipped spoon with my left hand and pry open her mouth by moving the spoon to the side, and then with my right hand hurry up and shove some baby food with the other spoon-this was because she could not open her mouth, and I refused to tube feed her! Small jaw (micrognathia)-previous and current; her jaw has grown out, but is still small. She is so cute and looks like she has a little overbite, but it really is due to her small jaw. Mild indentation of the temples (mostly noticed on her baby pictures-the funny thing is, I thought it was because she was a skinny baby, but then I had read somewhere that that is seen on babies with pachygyria/lissen.) Failure to thrive-diagnosis given when she was a baby and toddler-I always hated this one. Hyperreflexia(previous and current)-Mary's lower left and upper right reflexes are more brisk than normal, however, even though they are still mildly hyper, they are less hyper than when she was a baby and toddler. A few doctors have told me that she will become more contracted as she gets older. I have seen some of her muscles less hypotoned, and almost become "normal" but time will tell. Mary has always fallen and tripped frequently, and recently (April 2009) she was diagnosed with optic nerve atrophy, and with blindness in the right lateral vision field. The doctor said there is definintely no cure, as optic nerves do not regenerate. As time goes on, we will see if it progresses, or stabilizes. She will always be blind on that side. Drooling and difficulty handling secretions (previous)-she is actually doing very well handling her secretions, and only drools at night, so we cut her hair into a bob (which looks cuter anyways) so she doesn't wake up to the rat's nest in the morning! As a baby and toddler, Mary was very, very immature with food-she would play with it, and throw it, and was very messy. She was not able to use a fork or spoon until about a year ago. Speech delays and difficulties (which goes along with the oral/pharyngeal weakness)-Mary did not talk until she was three, and only then did she know about 10 words. Currently, Mary talks pretty good, but misses a lot of pronouns or linking type words in her sentences. She will not talk if someone is not listening to her and making eye contact. We all still have a hard time understanding some of the things she tries to say to us, and she will get frustrated). Mary is potty trained, but we still use a Pull-up at nights. She has been dry for 7 nights, which is a cause for great rejoicing around here! She still needs help wiping with #2, and refuses to go alone to the bathroom due to the recent earthquakes we have been having. Mary's strengths: great reader, friendly, cheerful, energetic, sensitive, and funny; loves to help around the house and keep busy. Challenges: Auditory processing disorder, speech and expressive delays, difficulty chewing and processing the bolus of food, attention deficits, mild hyperactivity, and math is very difficult to understand for her. Mary also overstuffs her mouth with food, and is prone to respiratory infections, which are very hard to overcome. Thank God we have not had one in over a year. She is unable to give a good, hard cough when sick. I am sorry this is somewhat out of order, but I went along my notes in her care notebook. Since the optic nerve atrophy diagnosis, I wonder in the back of my mind what is next. ]]> tag:www.candicelange.com,2009://1.380 2010-06-22T13:48:29Z 2010-06-22T20:41:47Z

These are families who have a child with Pachygyria and are interested in connecting with other families. **NOT for spam or solicitation. Please contact them if you have a child with Pachygyria only. Thank you. ** ----------------------------------------------------------- Candice Lange for...

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 ]]> tag:www.candicelange.com,2010://1.420 2010-06-04T12:19:37Z 2010-06-04T12:29:15Z

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...

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. You can focus on your purposes, or you can focus on your problems: If you focus on your problems, you're going into self-centeredness, which is my problem, my issues, my pain.' But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others. We discovered quickly that in spite of the prayers of hundreds of thousands of people, God was not going to heal Kay or make it easy for her- It has been very difficult for her, and yet God has strengthened her character, given her a ministry of helping other people, given her a testimony, drawn her closer to Him and to people. You have to learn to deal with both the good and the bad of life. Actually, sometimes learning to deal with the good is harder. For instance, this past year, all of a sudden, when the book sold 15 million copies, it made me instantly very wealthy. It also brought a lot of notoriety that I had never had to deal with before. I don't think God gives you money or notoriety for your own ego or for you to live a life of ease. So I began to ask God what He wanted me to do with this money, notoriety and influence. He gave me two different passages that helped me decide what to do, II Corinthians 9 and Psalm 72. First, in spite of all the money coming in, we would not change our lifestyle one bit.. We made no major purchases. Second, about midway through last year, I stopped taking a salary from the church. Third, we set up foundations to fund an initiative we call The Peace Plan to plant churches, equip leaders, assist the poor, care for the sick, and educate the next generation. Fourth, I added up all that the church had paid me in the 24 years since I started the church, and I gave it all back. It was liberating to be able to serve God for free. We need to ask ourselves: Am I going to live for possessions? Popularity? Am I going to be driven by pressures? Guilt? Bitterness? Materialism? Or am I going to be driven by God's purposes (for my life)? When I get up in the morning, I sit on the side of my bed and say, God, if I don't get anything else done today, I want to know You more and love You better. God didn't put me on earth just to fulfill a to-do list. He's more interested in what I am than what I do. That's why we're called human beings, not human doings. Happy moments, PRAISE GOD. Difficult moments, SEEK GOD. Quiet moments, WORSHIP GOD. Painful moments, TRUST GOD. Every moment, THANK GOD.. tag:www.candicelange.com,2010://1.419 2010-05-26T01:55:26Z 2010-05-26T02:08:33Z

Daysails are free because of the generosity of sponsors, donors and volunteers who cover the costs. A typical daysail schedule is about 2 hours on average. Participants arrive at 10 am, receive instruction and set sail at 10:15 to return...

www.heartofsailing.org info@heartofsailing.org For locations including 3 in Georgia: http://www.heartofsailing.org/locations.asp]]> tag:www.candicelange.com,2010://1.418 2010-05-25T21:10:59Z 2010-05-26T01:54:59Z

Group and individual cruise travel for adults and families dealing with Autism Spectrum, including Asperger Syndrome. For more details see the website or call. www.autismontheseas.com 800-516-5247...

www.autismontheseas.com 800-516-5247 ]]> tag:www.candicelange.com,2010://1.417 2010-05-25T19:53:24Z 2010-05-25T21:08:53Z

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...

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]]> tag:www.candicelange.com,2010://1.416 2010-04-08T12:54:09Z 2010-04-08T13:12:04Z

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...

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. ]]> Special Needs Camp - Camp Caglewood or to make a donation, visit www.caglewood.org or mail a check to Camp Caglewood, P.O. Box 158, Flowery Branch, GA 30542. • Camp Caglewood will also host a charity golf tournament April 22, 2010. For more information, visit www.caglewood.org ]]> tag:www.candicelange.com,2010://1.415 2010-03-24T02:18:30Z 2010-03-24T02:50:13Z

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...

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. ]]> tag:www.candicelange.com,2009://1.404 2010-03-23T15:42:18Z 2010-03-24T03:09:26Z

APRIL 14 is our last meeting for the year. 11 am - 12pm: Mark Biernath, Attorney, will speak on Special Needs Trusts and Wills Law Offices of Mark E. Biernath, P.C. (770) 455-0535 http://www.biernathlaw.com/ 12pm - 1pm: Open Discussion for...

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 ]]> tag:www.candicelange.com,2009://1.401 2010-03-22T11:45:33Z 2010-03-24T03:12:55Z

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...

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. tag:www.candicelange.com,2010://1.412 2010-02-01T13:16:41Z 2010-02-01T13:19:20Z

We provide affordable, quality art lessons for children with special needs located in Suwanee, GA. Grace Wonder Colors art studio, LLC www.wondercolorsartstudio.com...

www.wondercolorsartstudio.com]]> tag:www.candicelange.com,2009://1.411 2009-12-15T02:49:35Z 2009-12-16T01:42:04Z

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...

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. tag:www.candicelange.com,2009://1.410 2009-12-12T15:42:54Z 2009-12-12T16:13:33Z

Dr. Dobyns at the University of Chicago Medical Center is a recognized expert on birth defects of the brain, especially lissencephaly, or smooth brain disorder. Together with David Ledbetter, PhD, former director of the University of Chicago Center for Medical...

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.]]> tag:www.candicelange.com,2009://1.409 2009-12-12T11:34:51Z 2009-12-12T11:40:20Z

Young Life Capernaum gives young people with mental and physical disabilities the chance to experience fun and adventure, to develop fulfilling friendships and to challenge their limits while building self-esteem through club, camp and other exciting activities. Young Life staff...

www.younglife.org/Capernaum ]]> tag:www.candicelange.com,2009://1.407 2009-12-10T11:39:38Z 2009-12-10T13:53:10Z

The program is offered through St Joseph Hospital's Mercy Care Services. It serves uninsured, homeless, and immigrant families. Some services offered: general medical, dental, pediatric, and immunizations. Picture ID and proof income, loss of income, etc. is required. St. Joseph’s...

www.stjosephsatlanta.org.]]>