Rays of Sunshine Site Map

Please note: This site map is still under construction. To find sites not listed here please see the links on the side bar. It will be completed as soon as possible.

Hydranencephaly Definition of Hydranencephaly Diagram of the brain stem Diagram of the brain in Hydranencephaly About Hydranencephaly Cause of Hydranencephaly Hydranencephaly Fact Sheet "Research" Results 2006-2007 Survey results Dr Shewmon's Paper Fact Sheet: Our version Frequently Asked Questions What Doctors Say and What They May Mean Neurological Glossary Video Footage of children with Hydranencephaly Hydranencephaly Survey links	About Us Video Clips of the Children set to music Yahoo Picture site Hydranencephaly Picture Gallery Rays of Sunshine Quilt Contact a Family News
Our Rays of Sunshine Aaliyah Ada. Angel Ari Ayden Angel Ben Brandon Brennan & Brennan Angel Caleb Carly Chase Angel Chase Angel Chelsea Angel Chris Chrissy & Chrissy Cobyn & Cobyn Angel Daniel David Dillion Elizabeth Emily Heather & Heather Angel Isaiah Angel James Angel Jason Fogg Angel Jason Shepetis Angel Jayden Angel Jenessa Jeremy Johanna Angel Joey Angel Joshua Angel Joshua C. Angel Joshua R. Angel Kayda & Angel Kayda Kemmer Angel Kirsten Angel Kristen Kwan Kyra & Kyra Lara Logan N. Luke Angel Matthew Angel Melissa Angel Morgan Nikki & Nikki Noah Angel Paul & Angel Paul Rachel Angel Raistlin Robbie F. Angel Robbie M. Rose & Rose Angel Ryan G. Samuel K. Angel Samuel S. Angel Sarah J. Angel Sarah W. Angel Tanner Tayah Angel Teal Angel Tommy Angel Travis Troy Angel Tyler	For New Families Encouragement What Doctors Say and What They May Mean Words of Wisdom Dear Doctor Letter Prenatal Diagnosis of Hydranencephaly Options you may be given Experiences of Families with prenatal diagnosis What will life be like for a child with Hydranencephaly For Grieving Families Memorial Banners Memorial Candles Grief and Loss Poems What if? Part 3: Grief and Loss Resources What if? Part 3: Grief and Loss Links What if? Part 3: I'm not a mother anymore Difficult Times in Caring For Your Child Part 1 Taking Care of You: Reactions to having a child with a disability Adjustment Grief and Loss Families and Friends Dealing with Family and friends Managing Stress 10 Things You Can Do To Manage Stress Reactions of Others Facing the Reactions of Others Changes of Professionals Creating a support system for yourself Isolation, Depression, Fatigue - Asking for Help Reviewing Your Personal Support Network Taking Care of YOU! Child Care for the Child with Disabilities Respite Care Children with Disabilities Should we have another child Should We Have Another Child? Links to information on these topics
Difficult Times in Caring For Your Child Part 2 What If? What If?: Part 1: Your Child's Last Days Important Decisions to be Made Anticipatory Grief Supportive/Palliative Care Physical Needs of the Dying Child Dying Process What If?: Part 1: Links What if?: Part 2: Funerals Experiences with Cremation & Burial Cremation vs. Burial Cremation explained Cemeteries & Burials Experiences with planning funerals Saying Goodbye to Your Child Planning the funeral service Experiences with financing funerals Funeral Costs Financing a funeral service Paying for a funeral w/ preneed ins FAQ about preneed insurance What if? Part 2: Funeral links What if? Part 2: Eulogies What if? Part 3: Grief and Loss Resources Normal Reactions to Loss What you can do for a grieving person What not to say What if? Part 3: Grief and Loss Links What if? Part 3: I'm not a mother anymore What if? Part 4: Difficult Days Difficult Tasks Difficult Tasks Personal Experiences Difficult Times Difficult Times Personal Experiences Carrying On What if? Part 4: Not Just Another Day What if? Part 5: Children and Death How to tell a Child a Loved one is ill Answering a child's questions on death Explaining Cremation to a child Preparing children for a funeral Talking to children about death How to help your children Brothers and Sister's Grieve too What if? Glossary Choices Advance Directives Memorial Banners Memorial Candles Grief and Loss Poems	Resources in caring for a Child With Hydranencephaly Vision in a child with Hydranencephaly Cortical Visual Impairment Optic Nerve Hypoplasia Vision links Vision experiences Vision glossary Communication for a child with Hydranencephaly Communication Links Early Communication The First Goal: Intentional Communication Scripted Routine Basic Communicative Functions When a Child Chooses Incorrectly Making Choices Requesting Getting Attention Rejecting Assessing Intentionality Personal Dictionary It Takes Two to Talk Sensory Stimulation Links and Resources Early Stimulation and Development Active Learning Brain Gym Structural Cognitive Modifiability Sensory Stimulation Activities Sensory Stimulation Experiences Choosing a Toy Toys children like School for a child with Hydranencephaly Links to information about IDEA School Experiences School for a child with Hydranencephaly Is Inclusion best for my child Problems and their resolutions Suggestions For Inclusion Building a Partnership with the school Interviewing the Principal Individual Education Plans (IEPs) Inclusion Activity Suggestions Excellent Activity List Excellent Activity Checklist Activity Matrix Sample Books Kayda's book Noah's book Special Education Glossary Planning for Emergencies Emergency Tips Emergency Forms That's Not How I do It (Careplans) Careplans: Kayda Drew Pauli Care Notebook Tips and Tricks Gtube Tips and Tricks Clothing Tips and Tricks Positioning Tips and Tricks Pantry Remedies Accessibility in Home Construction Other tips Resources Medicaid/Social Services Overview Title V (Children With Special Health needs) WIC Early Intervention Medical Assistance Medical Flight Assistance Financial Planning Resources Home modification Resources Respite Resources Wish Granting Organizations Resources Glossary
Physical Care and Development Overview of Cerebral Palsy Orthopedic Considerations Medical Treatments for Spasticity Chemodenervation Botox Alcohol & Phenol Baclofen Baclofen & Botox Personal Experiences Orthopedic Surgery Links and Resources Hips Spinal Problems Cast care Orthopedic Surgery Experiences Therapy for a child with Hydranencephaly Range of Motion Exercises Other Types of Therapy Hydrotherapy Hippotherapy (Horseback Riding) Move Infant Massage Chiropractic treatments Point Percussion Therapy Cranial Sacral Therapy Positioning: Orthotics and Splints AFOs TLSO Hand Splints TheraTogs Orthotics and Splints Experiences Principals of Positioning Importance of Positioning Principals for Successful Positioning Floor Positioners Components of a Seating System Lower Extremity Positioning Equipment Wheelchairs Alternate Positioning Standers Personal Care Equipment and tips Bathing Bathing equipment Beds and sleeping Dressing Dental care Other tips Transportation Carrying and Lifting Sleeping medications Physical Development Glossary	Feeding a Child With Hydranencephaly Feeding & Positioning Tube Feeding Considering Tube Feeding Information on specific tubes Personal word on tubes and pumps Links to practical information on tube feeding Tube Feeding Experiences Oral Feeding Experiences Reflux Tests for GERD Medications for GERD Surgery Experiences Feeding Glossary

Health Conditions Asthma About Asthma Asthma Medications How to take Asthma Medications Personal Experiences Asthma Glossary Epilepsy Seizure type chart Frequently asked Questions Status Epilepticus Lennox Gastaut Syndrome Seizure medications Ketogenic Diet Vagal Nerve Stimulation Neurological Tests Seizure Experiences Glossary Hydrocephalus Hydranencephaly without Hydrocephalus Hydrocephalus versus Hydranencephaly Hydrocephalus Links Hydrocephalus Experiences Hydrocephalus Glossary Illnesses About Illnesses Pneumonia and Aspiration Other bacterial and viral infections Prevention of Illnesses Immunizations Immunization Experiences Care of Ill Child General Care Oxygen Use Suctioning Chest Physio About Antibiotic Use Illness Experiences Illnesses Glossary Miscellaneous Conditions Bradycardia Hypothermia Hypothyroidism Latex Allergy Diabetes Insipidus Drooling Constipation Vesicoureteral Reflux Precocious Puberty Respiratory Care and support Respiratory glossary	Resources by State Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware District of Columbia Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts