What I am Here For:
After reading the August 2011 issue, I would love to hear more stories from parents experienced with CFD, mHBOT and Mitochondrial Disease. Also looking for other parents that have children with the multiple dx of Autism, EE, Mito and probable PANDAS
To get my children healthy with the help of a knowledgeable physician and by the Grace of God, our Greatest Physician.
Finding a doctor that will put the pieces together. Aside from autism, our twins are medically complex with a variety of issues including the Eosinophilic Esophagitis and Mitochondrial Disease. Our twins require Convaid Scouts (wheelchairs) as they tire easily when having to walk a certain distance, Stevie is going through precocious puberty at age 7?, Stevie has sweating spells and trembling, we also think that he may be having seizures however we are having a hard time catching these episodes to videotape, both boys can not tolerate the heat, both require pureed' food as they lack the skills to chew and Sam has Strep at least twice yearly along with OCD behaviors. Due to their EE they are on an elemental diet and bison. Sam can still tolerate limited diluted pear juice and baby pears.
Bible study when twins are in school. Medical appts, IEP meetings, errands.
Reading the bible, researching autism, Eosinophilic Gastrointestinal Disorders, Mitochondrial Disease and Face Booking.
Books / Magazines:
Holy Bible, Autism Science Digest, The Kid-Friendly ADHD & Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet by Pamela Compart and Dana Laake. [My dd was GFCFSF for 1 year and lost her autism dx while on the diet. She is featured in some of the highlighted quotes throughout the book as Dana had interviewed her. My daughter's name is Ashley Stilson.] Francis Chan books, Frank Peretti books, Heaven is For Real, Jesus Wept is an AWESOME book
I can do all things through Christ who strengthens me. Philippians 4:13
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jer 29:11
13 For You formed my inward parts; You covered me in my mother’s womb.
14 I will praise You, for I am fearfully and wonderfully made;[b] Marvelous are Your works,
And that my soul knows very well.
Christian worship; Chris Tomlin, Casting Crowns, Mercy Me, Clay Crosse, Newsboys, DC Talk, Sidewalk Prophets, Kari Jobe, etc.
Only Dove approved movies and Hallmark movies on DVD:-) "Letters to God," "Johnny," "The Perfect Gift," "Faith Like Potatoes," "Grace Card," "Flywheel," "The Hiding Place," "Joshua," plus many many more...Louie Giglio "How Great is Our God?" series
Fan of Dr. Rossignol? Fan of the Georgia Hyperbarics Center and Bill and Emily Schindler.
Jesus Christ, my 3 special children for ALL of the pain that they endure on a daily basis for they are medically sick and their lives are diminished by it but in the end, I rest assured that our Mighty God has a plan and will use them to His Glory in His perfect timing.