Supporting you on your SLO journey
Suggested Readings & Products
The Smith-Lemli-Opitz Foundation network is here to support you with recommendations for your caregiving needs.
Books & Website Reading
Here are some titles and website resources our foundation members have used since the beginning. These will help start your search for helpful reading! You may even find more reading and resources beyond these mentioned here!
My First Baby Signs
Authors: Linda Acredolo and Susan Goodwyn
Baby Signs for Mealtime
Authors: Linda Acredolo and Susan Goodwyn
Baby Signs for Animals
Authors: Linda Acredolo and Susan Goodwyn
Baby's First Words
Author: Hinkler Books
Baby's First Signs
Author: Kim Votry and Curt Waller
Signing Illustrated
Author: Mickey Flodin
Caring for Young Children: Signing for Day Care Providers & Sitters
Author: Stan Collins
Thinking in Pictures
Author: Temple Grandin
Sign With Your Baby
Sign2Me Early Learning Resources
Choices in Deafness: A Parents' Guide to Communication Options
Authors: Sue Schwartz, Ph.d.
Kid Friendly Allergy Cookbook: More Than 150 Recipes That Are Wheat-Free, Gluten-Free, Dairy-Free, Nut -Free, Egg-Free, Low in Sugar
Author: Lynn Rominger and Leslie Hammond
Beyond Tears: Living After Losing a Child
Authors: by Ellen Mitchell, Rita Volpe, Ariella Long, Phyllis Levine, Madeline Perri Kasden, Barbara Goldstein, Barbara Eisenberg, Lorenza Colletti, Audrey Cohen, Carol Barkin
Grace For The Moment
Author: Max Lucado
Sometimes Miracles Hide
Author: Bruce Carroll
Where's Jukie?
Authors: Dr. Andy Jones and Kate Duren
Chasing Zebras
Author: Margaret Nowaczyk, MD
SLOs Growth Charts
Authors: Lee RWY, McGready J, Conley SK, Yanjanin NM, Nowaczyk MJM, Porter FD
Products
For SLO children that cannot eat, a g-tube is a necessity. Most parents new to SLO don’t know there are different kinds of g-tubes and different kinds of feeding pumps. For mobility and personal care appliances, families have found certain brands of equipment helpful in caring for their child or loved one. These brands and models are cited below.
These are suggestions for review only. Discuss these products with a surgeon or medical professional before you make a decision.
Gastronomy Tubes
• MIC-KEY button (balloon system; a more commonly used brand)
• BARD
• Microvasive by Boston Scientific
• PEG
• Freka (in the UK)
• Kendall/Tyco | Entristar (anchoring system) | Neutriport (balloon system)
• Ross
• mini-button (cross between Bard and Mic-key)
Protection
No need to protect g-tube sites unless fear of infection.
• Tegaderm semi-permeable adhesive film dressing
• Biggest 3M waterproof bandages
Feeding Pumps
• Kangaroo PET
• Ross Patrol
• Zevex Enteralite
• Zevex Enteralite Infinity – newer and is waterproof; allows daily totals
Medical Beds
• Monroe bed
• Medical Safety Bed
• Sleep Safe Bed
Sleep Safe Beds, LLC
3135 Dillons Mill Road
Callaway, VA 24067
Phone: 866.852.2337
• www.sleepsafebed.com •
Wheelchairs, Chair, Strollers, and Standers
• Kid-Cart
• McClaren Strollers
• Pushchairs
• www.adaptivemall.com •
• Rifton Mobile Stander
• Leckey Free Stander
• www.leckey.com •
• Mullholland Chair
• Zippie by Quickie Wheelchair
• Orbit wheelchair by Invacare
• www.invacare.com •
Orthotics
• Cascade Dynamic Ankle Foot Orthotics (DAFO)
•Sure Step Orthotics
Walkers
• Pacer Gait Trainer Walker
www.rifton.com/products/gait-trainers/pacer-gait-trainers •
• Kaye Posture Control Walker
• Gunnel Ring Walker
• EZ-Step Toddler walking vest
• Homemade walking vest: Take a typical child’s harness and remove the “leash” part; Cut it into three pieces, two of which are sewn to the harness shoulders for handles. the third goes up between her legs for additional support.
Oral Motor Equipment and Therapies
• Sonicare toothbrush
• Surround toothbrush www.specializedcare.com
• Oral syringes available by Baxa Corp. 303-690-4204
• Check with your local pharmacy for free bags of syringes (available in 100 count bags)
• Kinetic Kids Jiggler by Abilitations
Miscellaneous Equipment and Therapies
• Hydrotherapy (water therapy)
• YMCA – scholarships available
• Easter Seals has programs too
• Hippotherapy (equestrian/horses)
• MEDEK therapy
• Joe Cool Thumb Splints 1-800-223-3556
• Motor Therapy equipment www.abilitations.com
Phone: (800) 850-8602
• www.theraproducts.com
• “Different Roads to Learning” toys for tactile stimulation
• www.specialkidzone.com
• www.elitecarseats.com
Sensitivity Issues
• Stimulation Toys
www.pfot.com
www.southpawenterprises.com
• Koosh ball
• Wilbarger Brushing technique
Diapers
• Did you know? After a child turns 4 years of age, diapers are covered by Medicaid.
• ActivStyle Medical Supply www.activestyle.com
• Easter Seals provides diapers through Incontinent Supplies
