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 book

My First Baby Signs

Authors: Linda Acredolo and Susan Goodwyn

Baby Signs for Mealtime

Baby Signs for Mealtime

Authors: Linda Acredolo and Susan Goodwyn

Baby Signs for Animals

Baby Signs for Animals

Authors: Linda Acredolo and Susan Goodwyn

Baby's First Words

Baby's First Words

Author: Hinkler Books

Baby's First Signs

Baby's First Signs

Author: Kim Votry and Curt Waller

Signing Illustrated book

Signing Illustrated

Author: Mickey Flodin

Caring for Young Children Signing for Daycare Providers & Sitters

Caring for Young Children: Signing for Day Care Providers & Sitters

Author: Stan Collins

Thinking in Pictures by Temple Grandin

Thinking in Pictures


Author: Temple Grandin

Sign2Me early learning resources

Sign With Your Baby


Sign2Me Early Learning Resources

Choices in Deafness book

Choices in Deafness: A Parents' Guide to Communication Options



Authors: Sue Schwartz, Ph.d.

Kid-Friendly Food Allergy Cookbook

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

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 book

Grace For The Moment

Author: Max Lucado

Sometimes Miracles Hide book

Sometimes Miracles Hide

Author: Bruce Carroll

Where's Jukie? by Dr. Andy Jones and Kate Duren

Where's Jukie?

Authors: Dr. Andy Jones and Kate Duren

Chasing Zebras

Author: Margaret Nowaczyk, MD

Smith-Lemli-Opitz syndrome Growth Charts

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 the 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