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Shea's Story

Shea 1

How did you discover that your child had special needs?

We found out that there was something wrong at 17 weeks pregnant.  We were at a private 3D ultrasound and the nurse told us she couldn't see all 4 chambers of the heart.  At 18.5 weeks pregnant we had a Level 2 ultrasound done at Novant with a fetal-maternal doctor.  He confirmed what we had feared, Shea was diagnosed at Tricuspid Atresia and a VSD.

How did you learn about Easterseals Early Intervention?

We learned about Easterseals from our neighbor and friend, Brittani!  As soon as we told her about Shea's diagnosis, she let us know how Easterseals could help.

How do you feel your child is now doing in comparison to when they first started their Early Intervention journey? What are they able to do now that they weren't able to do before?

Shea is doing amazing!!  We have been in the care of Easterseals for just a little over a year and all I can say is WOW!  Easterseals has been able to provide therapies and support that were/are crucial to Shea succeeding in all areas!  In the beginning, Shea was delayed in areas of fine and gross motor skills. In June we had Shea tested for feeding/speech and found a significant delay there too.  Easterseals was wonderful in finding providers who would come to the house, as requested by his doctors.  The providers work with Shea weekly and at every session leave us with homework/tasks to help Shea continue to progress! 

After a few short months in working with OT and his EI, and only one month with PT, Shea sat up independently on Christmas Eve of 2016, he was 8 months old (and just three months post his 2nd open heart surgery!)  Shea is now 20 months old, and while not walking or standing on his own, he is so close!  The support of Easterseals and the team of therapists have narrowed the gap between Shea and his normal age peers in all areas.  Shea refused tummy time and now his favorite position to fall asleep in is on his tummy! He is speaking more sounds, babbles in longer "words", and follows simple directions.  Shea can climb up the stairs, climb up and down on the couch and pull himself up using a wall, person or furniture. 

What kinds of support have been the most helpful to you and why?

We always knew that it would take a village to help raise Shea, and that was BEFORE we knew of his heart condition!  We are so thankful for our family, who have spent many hours at the hospital and our home loving on Shea and helping with our homework/tasks to help Shea succeed. We have numerous heart families from around the world, who act as our support group, the Internet is a wonderful thing for showing support and caring for us and Shea! Our EI, Brittani, has been such a cheerleader for Shea!  We couldn't have survived this overwhelming journey without her.  She is a great wealth of knowledge and has amazing resources.  And of course, she always does what's best for Shea :)  Our therapy team also is always rooting for Shea, they make us feel a part of the team and understand that being a parent of special needs child is tough and sometimes really lonely.  Sometimes they were the only people we saw all week!​

Shea 2

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