Below is a list of resources, alternative treatments/therapies, and helpful links we've used over the years. We hope some of these links can help you, too!
http://www.childrensmercy.org/Clinics_and_Services/Clinics_and_Departments/Genetics/ ~ Children's Mercy Hospital Genetics Department in Kansas City, Missouri. This lab performed Whole Exome Sequencing (WES) on our family to diagnose our girls after 15+ years of zero answers genetically.
http://www.walshlab.org/ ~ Christopher A. Walsh Laboratory in Boston, MA. This lab specializes in research studies on developmental disorders of the human brain.
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.)
https://www.researchgate.net/publication/258058312_Deficiency_of_Asparagine_Synthetase_Causes_Congenital_Microcephaly_and_a_Progressive_Form_of_Encephalopathy ~ Information about Asparagine Synthetase Deficiency (ASNS gene)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4947274/ ~ Information about Asparagine Synthetase Deficiency (ASNS gene)
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)
http://www.riordanclinic.org/ ~ Riordan Clinic ~ A nutrition-based, integrative health facility in Wichita, Kansas
http://www.specialyoga.com/ ~ Yoga for the Special Child
http://www.fhtrc.org/ ~ Freedom Hooves Therapeutic Riding Center ~ Hippotherapy
http://www.upledger.com/therapies/index.php ~ Upledger Institute ~ Craniosacral Therapy
http://solawakening.com/solfeggio-frequencies-2/ ~ The Solfeggio Frequencies ~ We frequently listen to these on an app or YouTube to help various issues we're all facing. We find them to be extremely relaxing and therapeutic. There is even a frequency for pain/natural anesthetic. We most frequently listen to 528 Hz, as it relates to transformation and miracles as well as DNA repair.
http://www.harrys-hydro.org/what-is-hydrotherapy/ ~ Hydrotherapy benefits for individuals with special needs
http://www.webmd.com/balance/features/meditation-heals-body-and-mind ~ Meditation for stress relief. This is something Scott & I try to do often to combat high stress levels which can negatively impact our own health.
http://www.sleepreviewmag.com/2015/05/light-therapy-better-sleep/ ~ Information regarding blue light therapy for sleep disorders ~ CLICK HERE for an example of the type of blue light we use for our Lola!
http://opportunityfoundationofamerica.org/eagleeyes/main/ ~ EagleEyes is a technology used to help individuals communicate using their eyes. Both Claire & Lola have had great success being able to use it to control the mouse/cursor on a computer screen in order to make choices & also to play. SUCH AN AWESOME OPTION for those who are unable to communicate vocally! A fabulous company to work with, incredibly helpful two-day training sessions, and awesome customer support. HIGHLY recommend!
https://www.kiefer.com/ProductDetails/kiefer-adjustable-foam-swim-collar---pediatric-products-268.php ~ 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.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 email@example.com."
https://www.facebook.com/groups/BlenderizedRN/ ~ Blenderized RN ~ This is one of the BEST resources for starting a whole food, blended diet for your child with special needs who is fed via g-tube!!!
http://www.mealtimenotions.com/books-and-posters/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/ ~ Benik Corporation ~ Resource for soft hand splints ~ We use these to help our girls keep their thumbs out of their fists!
http://oreganicthrifty.blogspot.com/2009/05/goat-milk-formula-recipe.html ~ Raw 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 ~ A Campaign for Real Milk ~ Check out this resource online which helps individuals locate local sources of raw cow & goat milk
https://www.youngliving.com/en_US ~ Young Living Essential Oils ~ These oils have been a Godsend for our family -- ALL OF US! We use them daily in the diffuser and topically. I cannot say enough about how incredible these oils are, how PURE they are, and how much they have improved the health of every member of our family. I would be glad to help share information about these oils in any way I can! Email me at firstname.lastname@example.org for more information, and I can help get you started, too! I am part of a wonderful support network of individuals who all use these oils, and anytime any weird stuff crops up for us, they help guide me about what oils to use to help remedy the situation. I would be glad to connect you to this group as well!
http://www.prlabs.com/shop/index.php?main_page=product_info&cPath=1_10&products_id=93 ~ Max B-ND is a Probiotic-Fermented B Vitamin supplement we use with both Claire & Lola. This is necessary if using primarily a goat's milk formula, as severe anemia can result. It is a liquid, so we add it to Lola's bottles & put it directly into Claire's g-tube with a 10 mL slip-tip syringe.
https://www.standardprocess.com/Products/Standard-Process/Congaplex#.WBE-0eUrKUk ~ Congaplex is another supplement we use whenever our girls are sick. It is all-natural and super effective against both viruses and bacteria. Typically we use 4 capsules the first day, 3 the second day, 2 the third day, and 1 the fourth day. This works very well for both girls, though sometimes we need to adjust the number given daily, depending on how ill they are. I cannot say enough good things about how well this works for our daughters and us!
http://physicaenergetics.com/dv/products/Aller%252dTox-II..html ~ Aller-Tox II ~ This has been a Godsend for our Lola. It brought her out of a horrible allergic reaction, got her off oxygen, and she was completely back to normal in 3 days time. MIRACULOUS, POWERFUL HOMEOPATHIC ALLERGY REMEDY!
https://www.xymogen.com/formulas/products/275 ~ RelaxMax is a magnesium supplement we use to help the girls with constipation & relaxation. This has been hugely helpful for both girls.
https://www.xymogen.com/formulas/products/447 ~ OptiMag Neuro is another magnesium supplement we use with our girls. We rotate between RelaxMax and this one for both girls. This is the only magnesium supplement which is capable of crossing the blood-brain barrier. AMAZING STUFF! Very important for relaxation and stress management, as well as relaxing tone. It has been very helpful for both girls' constipation issues as well.
http://www.fruiteze.com/ ~ Fruit-Eze ~ Resource for a natural way of helping constipation
http://www.somatron.com/soft_furniture_cloud_chair.htm ~ Somatron Vibroacoustic Therapy Chair ~ This has been found to be extremely relaxing for individuals with a variety of special needs.
http://earthmamaangelbaby.com/ ~ Earth Mama Angel Baby ~ Natural and organic baby products ~ One of the only shampoo/body washes that our sensitive Lola can handle! LOVE this company & ALL that they stand for!!!
https://www.honest.com ~ 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! I used this website to find a local LLL group and specifically, a leader who specialized in helping babies with special needs learn to nurse properly. This leader was a godsend in my life (Lorna, I mean you!).
http://www.medelabreastfeedingus.com/products/51/supplemental-nursing-system-sns ~ Medela Supplemental Nursing System (SNS) ~ This system allowed me to breastfeed our Lola wayyyyyyy longer than I ever thought possible. This was a godsend, as she couldn't tolerate traditional formula whatsoever, and I also wanted to keep that bond with her & give her breastmilk as long as I could for her immunity/overall health. I got pretty quick at hooking it up, and it only added an extra minute or two of prep time before each nursing session.
http://www.kellymom.com/ ~ KellyMom ~ WONDERFUL breastfeeding/parenting website
http://www.westonaprice.org/ ~ The Weston A. Price Foundation ~ Great nutritional info for the entire family
http://www.mercola.com/ ~ 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/ ~ Ottobock ~ Resource for wheelchairs as well as the double wheelchair (Ottobock Kimba Tandem) we have for our girls.