Organizations that will pay for SAMI (Seizure monitor)

Here are some organizations that will help you pay for SAMI (or other seizure monitoring devices).

Danny Did  https://www.dannydid.org

Chelsea Hutchinson Foundation https://chelseahutchisonfoundation.org/
(They will also help pay for a seizure dog as well as devices)

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Do you know of other organizations that help pay for seizure monitoring devices?  Please comment below.  Please like our FB page to see future posts.   https://www.facebook.com/SupportedInOurTrials/

Donating old AFO's/DAFO's/SMO's/Braces/Orthotics

There are several charities that will take used AFO's/DAFO's/SMO's/Braces/Orthotics/etc.  Here are a few...

Transcend Orthotics
What they accept:  All types of braces are accepted including knee, back, feet, etc.
Who it benefits:  Various charities such as Project H.O.P.E Kids in Equador, Mexico, Nicaragua, and El Salvador.
Website:???
Mail braces to:
Attn:  Mellissa
Transcend Orthotics & Prosthetics
1246 E. Walnut Lawn St.
Springfield MO 65804
(Please write "donation" on the box)

Pediatric Orthotic Specialists
What they accept:  Used braces and shoes (that fit over the donated braces). 
Who it benefits:  Various impoverished areas of the world.
Website:  http://www.ortho4peds.com/recycling.asp
Mail braces to:
G.C. Meyer Inc.
Pediatric Orthotic Specialists
781-A Kenmoor Ave. SE
Grand Rapids MI 49546

Bluegrass Bracing
What they accept:  AFO's and KAFO's
Who it benefits:  Children in Jamaica
Website:  http://bluegrassbracing.com/pediatrics/orthotics-recycling-program/
Mailing address:
Bluegrass Bracing, Inc
1389 W. Main St.
Lexington KY 40508

Kauri Sue Hamilton School
Attention:  PT department
2827 13400 S.
Riverton, UT 84065

The Club Foot Club (Club foot braces only)
What they accept:  Club Foot Braces only
Who it benefits:  Papua New Guinea or Uganda
Website:  https://clubfootclub.org/help/donate-orthotics/
Mailing address:  Mark the box----" A gift of used medical splints of no value"
Used Orthotics for PNG
Mingende Rural Hospital
PO Box 189
Kundiawa, Simbu Province
Papua New Guinea

or

Christian Blind Mission International
Children's Orthopaedic Rehabilitation Project
PO Box 40375
Kampala, Uganda

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Recycling/Reusing Empty Pill Bottles

Here is an organization that you can donate your used pill bottles to.  They are sent to Africa so Dr.'s can distribute medications to patients.  Without the donated pill bottles, patients are sent home with pills wrapped in a piece of paper.

Matthew 25 Ministries is the name of the organization that collects them.  You can find their website here.

Acceptable Pill bottles include the following:

• Prescription or over-the-counter.

Pill Bottles need to be prepared in the following way or they are thrown away:

• Labels removed, leaving no residue or glue.  (Personally for me...if the label comes off easily, then I save the bottle, if it leaves residue behind I do not save the bottle).
• Sorted by color and type.
• Washed in soap and very hot water
• Rinsed and dried thoroughly
• Must have an all plastic lid, lids must be attached to the bottle (do not put lids on before bottle is completely dried)
• Placed in ziploc and labeled "Clean Bottles"

Mail to:
Matthew 25:  Ministries
11060 Kenwood Rd.
Cincinnati, OH 45242


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Medical flights and housing

Medical Flights

Start with Air Care Alliance...they have a list of over 60 medical flight programs and can connect you with the right one.
http://www.aircarealliance.org/

Air Ambulance Worldwide
https://www.airambulanceworldwide.com/medical-flight

Air Charity Network
https://aircharitynetwork.org/

Angel Flight
https://www.angelflight.com/

Angel Flight West
https://www.angelflightwest.org/

Angel Flight Soars
http://www.angelflightsoars.org/

(VETERANS) Angel Flight Veterans
http://www.angelflightveterans.org/

Angel Med Flight
https://www.angelmedflight.com/

Children's Flight of Hope
https://www.childrensflightofhope.org/

Corporate Angel Network
http://www.corpangelnetwork.org/#/home

Global Medical Relief Fund
https://gmrfchildren.org/

Lifeline pilots
https://lifelinepilots.org/

Mercy Medical Angels
https://mercymedical.org/

Miracle Flights
http://miracleflights.org/

PALS-Patient Airlift Services
http://www.palservices.org/

Patient Travel
http://patienttravel.org/

Southwest Medical Transportation
https://www.southwest.com/html/southwest-difference/community-involvement/charities/medical_transportation.html

Housing

Healthcare Hospitality Network
https://www.hhnetwork.org/

(CANCER) Joe's House
https://www.joeshouse.org/

National Association of Hospital Hospitality Houses
http://www.nahhh.org/

Ronald McDonald House
https://www.rmhc.org/

Social Media

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How to pay for a ceiling lift (In Utah)

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So your non-mobile child is getting heavier and your back is taking a toll.  It may be time for a ceiling lift.  A ceiling lift involves a track with a sling hanging from it.  Once the person is positioned in the sling the person can be moved along the track from room to room.

To find a business that installs these just google "Ceiling lift Utah" and you will get some options.  These are usually installed by elevator companies, stair lift companies and sometimes wheelchair van companies.

There are free-standing lifts (not attached to the ceiling) such as Hoyer or Liko, but they usually cannot get the person into the bathtub (the feet of the lift hit the bathtub) and they take up quite a bit of floor space.  There are some free-standing (floor lifts) that can get a person into a bathtub...so make sure to ask for that kind if you are choosing a free-standing lift.

Floor-lift such as Hoyer or Liko

One bad part of ceiling lifts is that they typically have to split the door frame above the door in order to maneuver the person from room to room.  It works, but it looks a little weird.

Lift cuts through door header

Lift cuts through door header

 Here are some options to pay for a ceiling lift (in Utah)

DSPD 
DSPD will pay for home modifications such as bathroom remodel, ramp or lift into the home, ceiling lift, ramp or lift and tie downs for a vehicle.  Ask your Caseworker.  They can apply for one-time funding.  It does take some time to get approved and there are a few hoops, but it will be paid for 100%.

Independent Living Centers
They pay for anything to help the person live independently or stay at home instead of being in a facility.  Each State is required to have Independent Living Centers (they may be called different names).  In Utah each county has one (some serve more than 1 county).  So go to the link and find your county.
https://uilc.org/en/resources/il-centers

Angels Hands
https://angelshands.org

United Healthcare
You do not need to have United Healthcare for your health insurance, but you do need to have health insurance.  They pay for medical expenses not covered, or not fully covered by commercial insurance.  You can get $5,000 annually per child and $10,000 per lifetime per child
https://www.uhccf.org/

Assistive Technology Foundation (Zions Bank Low Interest Loan)
You turn in the application and they help you get a low interest loan through Zion's Bank.  The loan will be 1/2 of prime and the Foundation pays the rest of the interest on the loan.  For loans over 10,000 you can usually get a 5 year term.  It takes about a week for the loan to go through once all of the paperwork has been submitted.  Once the application is complete it is good for 90 days.  You can use the loan more than once over a lifetime.
1-800-524-5152
http://www.uatpat.org
http://uatf.org/financing


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Things to think about when considering options for a lift...
#1) Which rooms of your home does the person want to get to?  ie:  bed, wheelchair, tub, couch
#2)  Does the lift need to lower all the way to the floor (some don't, some do)
#3) Does the lift need to get the person into the tub (most free-standing lifts cannot do this)
#4)  Will the lift fit through your doorways?  (Most free-standing lifts won't fit)
#5) What is the weight limit on the lift?
#6) Is there an emergency power source in case of power outage?
#7)  Would hydrolic (electric) or manual work best for your situation?
#8)  Am I allowed to make changes to the home (do I rent or own, will I be here long-term?)
#9)  Am I OK if the ceiling lift cuts through the door header?


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This is a portable lift that is an alternative to a ceiling lift and a freestanding lift.  It can only get the person from the bed to the wheelchair and back.

Portable lift you could move to a new house.  

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Since the bathtub is the trickiest area to get a lift to work, here are a couple of other bathing/lift options for you

For all of the bathing situations below the caregiver would not need to bend over to put the person into the tub.

Most of them would not work if your child has no torso/head control.

Bathtub lift you can use with a sling

Chair swings out of tub

Person sits on blue disk, swings into tub and slides into place

Person sits on bench and slides bum over into tub

Bath chair slides over tub.  Bathchair can recline farther than pictured.  Does not lower down into the tub.

Pole goes from ceiling to floor and chair swings into tub

This is to wash a person's hair...called a seahorse

Inflatable bathtub

Inflatable hair-basin

Wall Mounted Shower Stretcher--folds out of the way

What's your Self-Love Language

How do you take care of yourself? I think I am a physical touch...I love baths and soft blankets! Which is so weird...because as far as giving/receiving love from others...physical touch is at the VERY VERY bottom for me.

This is from "Blessing Manifesting" on Instagram here.

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How to deal with Stress/Anxiety when you have a child with disabilities

Here are some ways to deal with anxiety/stress ...  At the bottom is a link to a 1 page document you can print with them listed.

Anxiety Plan
1. Notice physical symptoms
2. Acknowledge that this a anxiety attack (see the rock in the field, anxiety is only 1 rock)
3. Tell yourself...
A. This is the body’s normal physical response to fear
B.  Endorphins are released to protect you. They make fight or flight or freeze.
C. Tell yourself...“It will be OK. This will end soon and I will be fine again.”
D. Recognize that all anxiety attacks will end
4. Do the routines below

5-4-3-2-1

• List 5 things you SEE
• 4 things you TOUCH
• 3 things you HEAR
• 2 things you SMELL
• 1 thing you TASTE

Grounding Questions

• Answer the following questions:  Where am I? What is today? What is the date?  What is the month? What is the year? How old am I? What season is it?

Happy place (most relaxing place you can think of)

• Picture yourself there.  Focus on as many details as possible.  What do you see? Hear? Smell? Taste? Feel?

Focus object

• Focus all attention on 1 object.  Consciously note everything about it possible

Distract yourself

• Distract with strong sensory experiences (Cold water, ice, strong taste, loud sound, silly putty)

• Call a friend, organize something, play a game, read a book

Relax your muscles

• Find a comfortable place to sit or lie down
• Close your eyes and focus only on your toes.  Tighten them for a count of 5, then relax

• Next focus on your feet.  Tighten all muscles in your

feet for a count of 5, then relax

• Continue up your body all the way up to your face

Deep breathing

• Put 1 hand on upper chest and 1 hand on diaphragm

(where rib cage meets stomach)

• Breathe slowly in through nose while counting to 5 in mind.  Hand on chest should stay still, while diaphragm should raise with breath.
• Breathe out slowly through nose while counting to 5
• Repeat

Repeating a mantra internally

• Such as “This too shall pass” or “Life Happens”

EFT Tapping
https://www.thetappingsolution.com/what-is-eft-tapping/

• Identify Problem (can also be general anxiety)
• Rate intensity of anxiety right now 0-10
• Create a statement.  Acknowledge problem and follow up with an unconditional affirmation about yourself as a person
• Even though I am feeling _________, I deeply and completely accept myself.
• Tap the meridian points about 5-7 times while saying the phrase 3 times at each point
• Take a deep breath after each meridian
• When done rate anxiety again 0-10
• If higher than 2, can repeat all meridians again if needed.

Crisis Plan (These are numbers for Utah)

EMERGENCY---call 911 or go to the nearest emergency room

TEXT---HOME to 741741 (Can take up to 5 min for responses)

APP---Use the SafeUT app (can chat or make phone call)

PHONE #’s---

Suicide Prevention Hotline (24 hour Crisis Line)

1-800-SUICIDE or 1-800-273-8255

UNI crisis services (24 hour crisis line) 801-587-3000

Warm Line (3 PM-11 PM) 801-587-1055

Weber Human Services (24 hour crisis line) 801-625-3700

Emergency Contacts

Mom phone #

Dad phone #

Other emergency contacts

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Here is the link to a document you can print.
https://docs.google.com/document/d/1lMKnq2wpE0dz0mZ6exhkhzDRBW-X6bnqef4vXGEB0y4/edit?usp=sharing

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