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Archive for the ‘Resources’ Category

In the age of social media, it is a wonderful place for people to be able to connect with others who are going through similar circumstances.    These Facebook groups have allowed us to connect with many families of a child born with EA/TEF, as well as discuss some of the other birth defects that can co-occur with EA/TEF.

Some of the support groups on Facebook are Open groups, which means that when you post in the group, not only does the group see your post but it also is shown on your personal Facebook timeline.  Other groups are closed groups, which means they are confidential and only the people within that specific group can see your post.

Below is a list of of some of those groups classified by whether they are an Open group or a Closed group:

Open Facebook support groups:

Closed Facebook support groups:

This is a small list of some of the Facebook community support groups out there.

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In honor of awareness month, I created some new awareness fact sheets regarding EA/TEF that can be more easily shared.

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EA Ribbon 1In just 5 days we have reached an average of 11,000 people with our Color it Periwinkle event, Bridging the GAP facebook site and our Bridge of Hope blog!   That is an exciting milestone and we thank ALL of you for your continued help in raising awareness regarding Esophageal Atresia!

The month of January is birth defect prevention and awareness month.  We ask you all to continue to “Pass the Ticket” to Color it Periwinkle for EA/TEF.  While someone may not join the event itself, know they are sharing the event, sharing items from our Facebook site and sharing items from our Bridge of Hope blog.

When you “Pass the Ticket”, you could potentially be reaching a mom or dad who has just started on their journey and is looking for support, an adult EA/TEF looking for resources or support, or even possibly a doctor’s office or hospital who is going through their first case of EA/TEF looking for resources/supports for family members.

One voice may reach several, while thousands can reach many!   It takes a village!  Thank you to everyone!

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10167924_10153140274806718_979895640252057223_nDo you ever have a hard time explaining your child’s condition to them, to other parents, to school teachers and/or friends?   The book “An EA/TEF Story Inside and Out” by Vanessa Munsch is a wonderful resource to use.

An “EA/TEF Story Inside and Out” is geared towards explaining what EA/TEF is.  It incorporates ‘sharing time’ into its theme and can be used as a conversation starter to talk about how EA/TEF affects your child specifically.

This book is a great resource for family members, local hospitals, doctor’s offices or schools.  Proceeds go back to help Ea/Tef children worldwide and is available for sale at www.eatefbooks.com.  The book is available in American and British English (TOF), French, Italian and Spanish.

Host an EA/TEF “Sharing Time” at school

001 invite (1)For Awareness month, I am going to print out some “Admit One” pictures, attach them to Vanessa’s book and distribute to my son’s school and pediatrician offices!

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“Great thoughts speak only to the thoughtful mind, but great actions speak to all mankind.” – Theodore Roosevelt

Social media can be such a powerful tool in connecting people who are looking for others going through similar situations or just simply looking for thoughts, suggestions and ideas.

In 2007, when our son was born with EA/TEF there were very little resources on the internet regarding esophageal atresia/tracheoesophageal fistula.   It was not until 2010 that we met some amazing fellow EA families online via social media.  It was an AMAZING feeling to be able to meet some of these families face to face and know we were not alone in our journey.  Our group was small at first, with families from Massachusetts, Connecticut, Rhode Island, New Jersey and California.  It is these families who helped inspire and create “Color It Periwinkle to raise awareness for esophageal atresia”.

The birth of this awareness campaign started with these families in 2011 and has continued to grow 6 years later with more amazing families throughout the world!  The campaign and ribbon we created has special meaning to our families as we continue to grow.   It is a tie that binds us together as a community  The colors we chose have specific meaning:

Periwinkle signifies eating disorders, esophageal cancer and GERD.  All items for which EA/TEF children can be at risk for.

The white signifies the innocence of our children.

The passion these families had, and continue to have today, is always such an inspiration to me.   You are all an inspiration everyday and I thank you for everything that you do!  THANK YOU!

Leave a note of gratitude for the person(s) who inspire you!

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On the day you were born……

We were told you would probably never eat by mouth.

We would be lucky if you survived through the week.

That our lives, as we know it, would be changed forever……

On the day you were born, you proved to be a fighter.

On the day you were born, you changed our lives for the better!

“Every 4.5 minutes in the U.S. a child is born with a birth defect”

In 2012, Utah parents of children with birth defects in collaboration with the National Birth Defects Prevention Network created a powerful PSA regarding “On the day I was born”.  The PSA was funded by a private organization.  www.endbirthdefects.org

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On the day I was born PSA

January is National Birth Defects Prevention month and we use this month to raise awareness regarding EA/TEF and the numerous birth defects associated with EA/TEF.  To Learn more visit the National Birth Defects Prevention Network.

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I have found over the years that as a parent of a child born ‘medically fragile’ with complex medical needs; at times, communication can breakdown among family and friends.  I think it is equally hard for family or friends to understand that the ‘normal’  we use to share now carries some additional responsibilities that most parents of healthy infants may not and hopefully will not have to experience in their lifetime.

Trying to meet everyday expectations; as well as, meet the medical needs of your medically fragile child can put an unsurpassed amount of stress on mom and dad.   I must admit though, that due to our stress, we may not communicate this to you, our family and friends, as well as we should.   So for all of us, as we navigate through a newfound world and try to become accustomed to our new everyday ‘norm’. I ask for

 just a little understanding please…..

I think that the number 1 question that tends to draw battle lines where none should be drawn is the infamous:

Why are you not coming to visit us?

Most often, when elicited with the infamous “Come see us”, it can be a very stressful question to ask.   Yes, it is a very simple question, but because we are all ready stressed, our response may not come out as it should.  Due to this, we tend to elicit the infamous response of “You don’t love us, you don’t want to share your child, you do not want to be a part of our family”.

So to all the family and friends’ out there, please know that this is not the case.  And most often this is where we ask for just a “little understanding please”……….

There are some factors that need to be considered and perhaps by coming to visit ‘us’ we can help to teach you some of those factors.  For example:

1.  A simple visit to someone’s house requires more than just the packing of a diaper bag for us.   There are meds to pack, special foods, suction machines, 02 stat monitors if needed and for some children who may have a trach or be tube fed, it requires packing all the necessary medical equipment that may go with it.

2.  Because our children are ‘medically fragile’, we also have to be careful of germs.  This is a consistent worry of ours.  We all ready live in the hospital more often than we would like to, so whatever we can do to prevent another hospital trip, we will do for the sake of our child.

3.  Lack of sleep by both parents is a constant, and not just because our child is an infant.  There are strict medical schedules to keep to.  Just because we are no longer in the hospital it does not mean that things are back to ‘normal’.   It’s not just about waking up every 2 hours to feed your baby.  There may be g tube feedings, hourly meds, nebs every 4 hours, suction every 15 minutes or so, if not more.  So please know, when we say we are tired and max’d, we REALLY are!  What we really want is someone to say “Hey I’m on my way, I want to learn your little one’s needs so you can go take a nap”.

4.  Isolation, isolation, isolation.  Because we need to take care of the aspects of our medically fragile child we can feel so isolated as family and friends tend to withdraw and become very angry vs try to learn and understand what our daily schedule now contains.  So please, don’t isolate us anymore than we all ready feel.

5.  Know that we really DO want to go out, but it is just not as simple as we wish it to be.   We need to make sure we find someone who can meet the medical needs of our child while we are out.   It’s not just about separation anxiety for us; it’s about whether or not our ‘medically fragile’ child will be OKAY when we do get back.

6.  The financial constraints are also enormous and are on our minds everyday.   Most families are two ships passing in the  night as they try to ensure that they are meeting the financial needs to pay for the continuous flow of medical bills for our child.  Most often, we just can’t afford that quick lunch or cup of coffee.  However; in turn, also leads back to #1 trying to pack all our child’s gear or #5 in trying to find someone who can care for our medically fragile child.

7.  Most important, we tend not to take care of our needs but put our child’s needs first.   Bring us a meal; as odds are, we took care our little one but not ourselves.  Sit with our little one so we can take a shower or run to the store to get milk; odds are when they went down for their nap, we were busy preparing the feeds or medicines for the next round.

So, yes, for us it seems like a never-ending cycle; which at times can lead you to feel as if we are not allowing you to be a part of our lives.  But know that we do need you, we just need you in a different way; and so does our child.   We simply ask for a little understanding please….

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