Here are tips and pieces of advice we have learned along the way that have helped us make this journey smoother. My hope is what we've learned will help others! We will continue to update with new tips as we continue our fight against Cystic Fibrosis.
"What We've Learned So Far" Tip #1 - Organize Your Hospital Bills
"What We've Learned So Far" Tip #2 - Become An Expert
"What We've Learned So Far" Tip #3 - Fight For Your Voice
"What We've Learned So Far" Tip #4 - Manage Your Medical Information
"What We've Learned So Far" Tip #5 - Packing for the Hospital
"What We've Learned So Far" Tip #6 - Surviving the Hospital
Cystic Fibrosis Foundation - This Foundation is what keeps CF research going. The CFF website offers lots of information about the disease as well as updates on how CF research is making progress in the lives of those affected by Cystic Fibrosis
Tips for Getting Your CFer to Eat More - This blog post offers fabulous suggestions for helping your preschool CFer eat!
No Fears, No Tears DVD
A Child In Pain: What Health Professionals Can Do
Coping in Young Children: Early Intervention Practices to Enhance Adaptive Behavior and Resilience
The Handbook of Child Life: A Guide for Pediatric Psychosocial Care
Extreme Parenting: Parenting Your Child With a Chronic Illness
Parenting Children With Health Issues
Your Child In The Hospital
Ideas For Helping Children of All Ages Cope
* Find a distraction. Kids may feel less discomfort and stress if they blow into a whistle or party blower, count, sing, hug a toy, or think of something good when getting an injection. An older child might prefer to wear headphones or watch a video during injections (tip from here.)
* Purchase/wrap small tiny toys that the child can open each time they endure a painful procedure (tip found here.)
* Give your child choices such as "do you want to take your red pill first or your blue pill first?" or "do you want the IV in the left arm or in your right arm?" (tip found here.)
* Decorate the hospital room with bright posters, Mylar balloons, crepe paper streamers and/or the child to liven up a dull room (tip found here.)
* The Coping Club - a website made up of youngsters with and without CF who want to tell other kids how they enrich their lives despite their daily medical challenges
* The Starlight Foundation - A foundation that offers a comprehensive menu of outpatient, hospital-based and Web offerings that enable to provide ongoing support for children and families — from diagnosis through the entire course of medical treatment.
Helping Siblings Cope
* Bring up siblings when people focus only on the sick child. For example, if someone exclaims, "Oh look how good Lisa looks," you could say, "Yes and Martha has a new haircut, too. Don't you like it?" (tip found here.)
* Give siblings gifts and tokens of appreciation for helping out during hard times. Encourage your sick child to share the many toys and gifts he receives to prevent hurt feelings or jealousy (tip found here.)
Other Special Needs Resources
Parenting Special Needs Online Magazine
The Unspoken Concern: Post Traumatic Stress Disorder in CF
Feeding Tube Resources
Feeding Essentials.com - This website sells fabulous items that make feeding tubes easier! Highly recommended!
Hovannesian Feeding Foundation - a feeding tube website and resource
Oley Foundation - for those with Feeding Tubes or on Home IVs