Resources

Below is a list of resources, alternative treatments/therapies, and helpful links we've used over the years...

INFORMATIONAL WEBSITES:

http://www.simulconsult.com/resources/head.html  ~  Head Circumference Calculator (oh, and PLEASE let's not discuss how my girls' heads are -13.1 S.D. and -16.7 S.D. below the norm... DAMNNNNN.)

http://childrenwithmicro.org/  ~  Foundation for Children with Microcephaly (FCM)

http://www.hgu.mrc.ac.uk/people/a.jackson_lab_research_09/a.jackson_lab_forms09.html  ~  Dr. Andrew Jackson, Medical & Developmental Genetics, studying microcephaly and dwarfism.

http://www.aph.org/cvi/index.html  ~  Information about Cortical Visual Impairment (CVI)

http://www.brainandspinalcord.org/cerebral-palsy/types/spastic-quadriplegia.html  ~  Information about Spastic Quadriplegia Cerebral Palsy

http://www.orpha.net/data/patho/GB/uk-MVMSG.pdf  ~  Information about Microcephaly with Simplified Gyral patterns (MSG)


ALTERNATIVE TREATMENT/THERAPIES:

http://www.riordanclinic.org/  ~  Holistic medicine at its finest!

http://www.specialyoga.com/  ~  Yoga for the Special Child

http://www.fhtrc.org/  ~  Flint Hills Therapeutic Riding Center ~ Hippotherapy

Craniosacral Therapy  ~  Upledger Institute

Hydrotherapy

Meditation


HELPFUL LINKS:

Kiefer Pediatric Flotation Collar  ~  For Hydrotherapy

http://www.waterwaybabies.com/  ~  WaterWayBabies System for Hydrotherapy

http://www.andreamcdowell.com/Beanie/archives/being_small/  ~  One of THE BEST blogs I've ever read regarding having a child with dwarfism.  Scroll down to the July 1, 2005 entry entitled "Helpful Hints to the Parents of the Averagely Sized," written by my friend, Andrea McDowell.  I can SO relate. xo

http://www.tubietoppers.com/  ~  G-tubes with style!  WONDERFUL, well-made, high quality, super absorbent, DARLING cloth g-tube pads made by my friend, Kate!

http://www.vitamix.com/  ~  Vitamix Blenders ~ Contact Sandy Ventimiglia for more information on attaining a refurbished Vitamix blender (which has a full 7-year warranty!) for your child with special needs.  THIS IS THE BEST BLENDER ON THE MARKET (in my opinion!) and CRUCIAL for a child fed a blenderized diet.  Information on this AWESOME deal from Sandy/Vitamix is as follows:


We are pleased to offer a special discount on a reconditioned Vita-Mix 5200.  The special price is $299.25 + applicable sales tax, US pricing. 
 
To qualify for the special discounted price, we require a note or verification from the individuals Doctor, Nurse, Occupational Therapist, Dietitian (or other health-care provider).  The notification can be sent to my attention (via FAX 440-235-3726 or US Mail – 8615 Usher Rd., Cleveland, OH 44138)
 
To be considered for a machine to be donated, we will need to have additional  documents filled out.
 
Please contact me for further assistance.  I am available Monday – Friday 8 a.m. to 5 p.m. EST at 1-800-848-2649 ext. 2501 or by email at sventimiglia@vitamix.com.


http://mealtimenotions.com/products/book-homemade-blended-formula/  ~  Blended Formula Handbook by Marsha Dunn Klein, MEd, OTR/L and Suzanne Evans Morris, PhD, CCC-SLP ~ invaluable resource for using a blenderized diet with your g-tube fed child!

http://www.benik.com/  ~  Resource for soft hand splints (we use this to help our girls keep their thumbs out of their fists)

http://oreganicthrifty.blogspot.com/2009/05/goat-milk-formula-recipe.html  ~  Goat milk formula recipe which is often helpful for babies who cannot tolerate anything else.  Check with a doctor first before using.

http://www.realmilk.com/where.html -- Website to help locate local sources of raw cow & goat milk

http://www.fruiteze.com/  ~  Resource for natural way of helping constipation

http://www.calmnatural.com/  ~  Resource for natural way of helping constipation ~ there is a Kids Calm available or we opt for the plain Calm (no extra additives) and adjust dosage based on weight.

http://www.countrylifevitamins.com/store/superior-b-12-lozenges-3000-mcg  ~  The B-12/Folic Acid supplement we use with Lola.  This is necessary if using primarily a goat's milk formula or severe anemia can result.  We crush with two spoons and spoon powder under her tongue for maximum absorption!

http://www.earthmamaangelbaby.com/  ~  Earth Mama Angel Baby ~ All-natural, organic, toxin-free baby products ~ THE BEST!!!

https://www.honest.com/?new_nav=true  ~  The Honest Co. ~ Stylish, non-toxic & high-performance products.  We buy these safe, all-natural diapers, wipes & baby shampoo here & they are delivered right to our door!

http://www.llli.org/  ~  La Leche League International ~ breastfeeding information galore!

http://www.kellymom.com/  ~  WONDERFUL breastfeeding/parenting website

http://www.westonaprice.org/  ~  Great nutritional info for the entire family

http://www.mercola.com/  ~  My favorite natural health website!

http://wish.org/  ~  Make-A-Wish  ~  This fabulous organization grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.

http://www.ottobockus.com/Mobility/Mobility-for-kids/  ~  Resource for wheelchairs as well as the double wheelchair (Ottobock Kimba Tandem) we have for our girls.


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