Ea-Tef Pages to help you

For helping Parants with Children Born unable to swallow

Your child might find it difficult to swallow food and liquids after EA/TEF repair.

This is called dysphagia. You can help your child by serving foods with dressings or sauces, letting your child take sips of liquid after every two or three bites, cutting food into small pieces, and scheduling five or six small meals during the day.

If food becomes stuck, stay calm, offer some sips of liquid, and distract your child while they wait for the food to pass. Contact your child’s health-care provider if your child finds it hard to swallow even their own saliva, if the food does not pass with the help of liquid or if their eating habits have changed a lot for two meals in a row.

Click on the Banner link to visit their website.

 

This is a Great Website 

I am an advocate for children with IEP’s

Parents, educators, advocates, and attorneys come to Wrightslaw for reliable information about special education law and advocacy for children with disabilities.

Begin your search for information in the Advocacy Libraries and Law Libraries. You’ll find links to hundreds of articles, cases, and resources on the Topics page.

New to Wrightslaw? In this short video, Pete Wright gives you a tour of Wrightslaw and shows you how to find answers to questions.

Subscribe to The Special Ed Advocate, our free online newsletter.

Wrightslaw special education law and advocacy training programs, virtual or live, are designed to meet the needs of parents, advocates, attorneys, educators, health care providers, and others who represent the interests of children with disabilities and their families.

https://www.wrightslaw.com/?fbclid=IwAR0v8CTAyeeilHXUC0qhAoWtKQM_HKRKzpsKkzXF2TNYeGX3YdsHCzMoiro

Esophageal atresia/tracheoesophageal fistula (EA/TEF) is a condition resulting from abnormal development before the birth of the tube that carries food from the mouth to the stomach (the esophagus). During early development, the esophagus and windpipe (trachea) begin as a single tube that normally divides into the two adjacent passages between four and eight weeks after conception. If this separation does not occur properly, EA/TEF is the result.

In esophageal atresia (EA), the upper esophagus does not connect (atresia) to the lower esophagus and stomach. Almost 90 percent of babies born with esophageal atresia also have a tracheoesophageal fistula (TEF), in which the esophagus and the trachea are abnormally connected, allowing fluids from the esophagus to get into the airways and interfere with breathing. A small number of infants have only one of these abnormalities.

There are several types of EA/TEF, classified by the location of the malformation and the structures that are affected. In more than 80 percent of cases, the lower section of the malformed esophagus is connected to the trachea (EA with a distal TEF). Other possible configurations include having the upper section of the malformed esophagus connected to the trachea (EA with a proximal TEF), connections to the trachea from both the upper and lower sections of the malformed esophagus (EA with proximal and distal TEF), an esophagus that is malformed but does not connect to the trachea (isolated EA), and a connection to the trachea from an otherwise normal esophagus (H-type TEF with no EA).

While EA/TEF arises during fetal development, it generally becomes apparent shortly after birth. Saliva, liquids fed to the infant, or digestive fluids may enter the windpipe through the tracheoesophageal fistula, leading to coughing, respiratory distress, and a bluish appearance of the skin or lips (cyanosis). Esophageal atresia blocks liquids fed to the infant from entering the stomach, so they are spit back up, sometimes along with fluids from the respiratory tract. EA/TEF is a life-threatening condition; affected babies generally require surgery to correct the malformation in order to allow feeding and prevent lung damage from repeated exposure to esophageal fluids.

EA/TEF occurs alone (isolated EA/TEF) in about 40 percent of affected individuals. In other cases, it occurs with other birth defects or as part of a genetic syndrome (non-isolated or syndromic EA/TEF).

How common is EA/TEF?

EA/TEF occurs in 1 in 3,000 to 5,000 newborns.

ghr.nlm.nih.gov/condition/esophageal-atresia-tracheoesophageal-fistula

For helping Parants with Children Born unable to swallow

One of the Academy’s top advocacy priorities is ensuring children have access to high-quality, affordable health care that meets their unique needs. The Academy is currently working at the state and federal levels to support the Affordable Care Act (ACA) and to protect and strengthen Medicaid and the Children’s Health Insurance Program (CHIP).

The expandable list below includes the following state-by-state fact sheets, highlighting how ACA protections and Medicaid and CHIP support and improve children’s health:

 

State Medicaid and CHIP Snapshots, 2018: Underscores the importance of Medicaid in providing coverage for children to help them grow up healthy and thrive (in partnership with Georgetown University Policy Institute Center for Children and Families)

 

Children’s Coverage Snapshot Fact Sheets: Uses data on the ACA, Medicaid, and CHIP to highlight how all three programs have worked together to ensure children’s access to health coverage (in partnership with Georgetown University Policy Institute Center for Children and Families)

 

CHIP Fact Sheets: Outlines how each state’s CHIP program works for children (in partnership with the Georgetown University Policy Institute Center for Children and Families

 

Medicaid Fact Sheets: Explains the importance of Medicaid for children in each state (in partnership with the Children’s Hospital Association

 

EPSDT State Profiles: Provides detailed information each state Medicaid program’s Early and Periodic Screening, Diagnosis and Treatment (EPSDT) benefit and how this compares to AAP/Bright Futures guidelines and recommendations (supported by the Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration).

 

Click the link below very interesting

 

Learn more about this document in Using Your State EPSDT Profile. 

 

The American Academy of Pediatrics (AAP) is pleased to present State Early and Periodic Screening, Diagnosis
and Treatment (EPSDT) Profiles.

I encourage everyone to watch the video and do research for both plans.

It’s extremely important that you know your parent’s rights, what is available to you & your child and get an advocate that is going to be a fighter and supportive!

https://www.understood.org/en/school-learning/special-services/504-plan/video-whats-the-difference-between-an-iep-and-a-504-plan

6 tips to make sure your child’s 504 plan is being followed

https://www.understood.org/en/school-learning/special-services/504-plan/6-tips-to-make-sure-your-childs-504-plan-is-being-followed

https://www.understood.org/en/school-learning/special-services

independent living for people with disabilities

The Independent Living Rehabilitation Program (IL) helps consumers live a more independent life. IL provides an alternative to living in a nursing home or other facility for eligible individuals.

Services are person-centered and may be provided directly, purchased or coordinated through other community resources. If the Independent Living program is unable to meet a person’s needs, that individual may be referred to other partners for services as appropriate.

For helping Parants with Children Born unable to swallow

State Medicaid & CHIP Profiles

Every state’s Medicaid and CHIP program is changing and improving – most states are expanding coverage for low-income adults; all states are modernizing their Medicaid/CHIP eligibility, enrollment, and renewal processes and systems, and taking advantage of many of the new flexibilities provided by the Affordable Care Act. Finally, states are coordinating the application and enrollment process with the messaging and policies for the Health Insurance Marketplace operating in their state to ensure that there is no wrong door to coverage.

Click on the map below or select from the drop-down to see each state’s Medicaid and CHIP profile.

OPEN THE LINK TO FIND OUT MORE

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-State/By-State.html

Independent School Search – Find and Compare Schools UK and Worldwide

www.isbi.com

Welcome to Disability.gov, the U.S. federal government website for information on disability programs and services nationwide.

www.disability.gov/

If you need help with a claim, contact the Social Security Administration

www.ssab.gov/

USA GOV on HOUSING and RENTING ETC

portal.hud.gov/hudportal/HUD?src=/groups

Medicaid Home _ HEALTH

www.medicaid.gov/

hosp.org/who-we-are

Help HOPE Live Fundraising
Tell us a little about the reason for the fundraising campaign and we’ll help you make the best choice for fundraising.

The National Patient Travel Center provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.

The purpose of the National Patient Travel Center is to ensure that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical transportation.

http://www.patienttravel.org/

Children with Medical Handicaps (BCMH)

The Children with Medical Handicaps Program (BCMH) is a healthcare program in the Ohio Department of Health (ODH). BCMH links families of children with special health care need to a network of quality providers and help families obtain payment for the services their children need.

BCMH’s mission is to assure, through the development and support of high quality, coordinated systems, that children with special health care needs and their families obtain comprehensive care and services that are family-centered, community-based and culturally sensitive.

http://www.odh.ohio.gov/odhPrograms/cmh/cwmh/bcmh1.aspx

Christy’s Courage Foundation

Christy’s Courage Foundation is a non-profit foundation. Run by an Adult Living with Ea-Tef

Christy’s Courage is a non-profit organization based in Charlotte, North Carolina specializing in assisting EA/TEF patients with their specific needs for the betterment of their lives, their families and caretakers. Our Mission: The mission of Christy’s Courage is to improve the quality of life for children, adults, and their families with EA/TEF by offering support groups, medical education, pharmaceutical & medical equipment, and holistic treatment resources. We are honored to help EA individuals, families & caregivers with no monies taken, just done out of love for our fellow EA Warriors!

 

Click here to read our Blog: http://christysconnection.blogspot.com/

http://christyscourage.org/

501(c)3 Non-Profit Foundation Founded in 2012

 

In starting this website off, I have come to understand that there are some very strong Parents out there. We came across, Audreysarmy, an idea set up to help other Parents, these small websites put the time in to help others, please. As with the Small Charity found on the Vacterl – Charge page, Parents like yourself’s doing good for others in memory of their own Child. For this, I tip my hat to, and this is why this website total supports what they are trying to do for others, and sometimes its the smaller non-profit ideas that get things done than the big Charities.

Audrey’s Army is excited to announce we are now a non-profit, tax-exempt 501(C)(3) organization. All donations made to support our mission are eligible as tax-deductible to the extent allowable by law. Please visit our website to learn more about a cutting-edge research fund and crickets hope bags. (Please go read their website links below)

Audrey’s Army Facebook page https://www.facebook.com/audresarmy

Their Website link http://www.audreysarmy.com/

R.I.P Sweet Angel x

 

 

Do you live in the U.S.A

If so I can personally recommend this site, click links below to visit their front page and I will link the 2017 years worth of free internet mag page for you to look at below.

Welcome to Complex Child, your source for information on children who are medically complex or have disabilities!

Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand.

We are in the process of loading in our archives from the old site. Currently, articles from 2011 through 2018 are on the new site, with links to older articles on the old site. Thank you for your patience during this transition!

Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.

Complex Child is FREE! The new edition and all archived editions and articles are completely free but are only available online.

Link to their Front Page

www.complexchild.org

http://complexchild.org/editions/

https://www.facebook.com/ComplexChild

Insurance and Medicaid

This section includes articles about Insurance, Medicaid, and other funding sources. Insurance and Medicaid policy and other funding options, click the link below for more info from this very good website.

Insurance and Medicaid

Advocacy coalition fighting for health care and services for children who are medically fragile, medically complex, or disabled. Families, medical professionals, and other concerned citizens are welcome.

 

Coalition Group Members:
Illinois: MFTD Waiver Families
FB: https://www.facebook.com/savemftdwaiver/(plus a private group for families)
Twitter: @SavetheWaiver
Web: http://www.mftdwaiver.org/

 

Louisiana: Trach Mommas of Louisiana
FB: https://www.facebook.com/trachmommas/
Web: http://www.trachmommas.org/

 

North Carolina: Advocates for Medically Fragile Kids NC
FB: https://www.facebook.com/groups/AdvocatesforMedicallyFragilekidsNC/
Twitter: @fragilekidsnc
Web: Coming Soon

 

Oklahoma: Oklahoma Action
Fb: https://www.facebook.com/groups/OklahomaAction/

 

Pennsylvania: PA Action Protecting Disability Rights
FB: https://www.facebook.com/groups/PADisabilityRightsAction/

 

Texas: Protect TX Fragile Kids
FB: https://www.facebook.com/ProtectTXFragileKids/
Twitter: @fragilechildTX
Web: http://www.protecttxfragilekids.org/

 

Virginia/Maryland/DC Area: Little Lobbyists
FB: https://www.facebook.com/groups/littlelobbyists/
Twitter: @LittleLobbyists
Web: http://www.littlelobbyists.org/

 

National: Various Family Voices Affiliates
Web: http://www.familyvoices.org/

 

Website: http://medicallycomplexaction.org/

I met Amy via someone else I looked into her idea and asked her if I could run this idea on my site for free because I feel her hard work and commitment is worth being here.

Meet Amy a lady that got up and sorted out something for herself then advised by her own Doctor to start making these for others, I asked her for some background on how these came to be, read below.

I have a Trach also my vocal cords are paralyzed. I got my trach back in 2012 just from getting sick. Doctors don’t know why my trach it is paralyzed. They thought it might be a virus but they had looked at where I went to an ENT when I was 30 and seen they where paralyzed then. So now since they looked at the old records they realized that my trach would be for life now. But I am good I actually have my original voice so I can talk very good. How I started my business I made me a couple and my doctor saw it.

He told me to start making them because no one was making them. I checked into it and that is how I got started. In a month they were over the world. I have tons of countries in the world where people have brought trach ties.

My biggest is Europe and Canada. I only advertise right now on FB but we are putting my brochures in doctors offices now. Thank you again for helping.

Ties are for adults and children with a tracheotomy. They are made of soft breathable cotton and soft nylon padding. They designed to Velcro on front.

Email: amystrachties@gmail.com

https://www.facebook.com/amystrachties/

https://amystrachties.com/products