Casey's Circle

Casey's Circle

Strengthening Circles – Improving Quality of Life

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All posts by Marty Barnes

Neuromuscular Diagnosis – A Closer Look at SMA

The Child Neurology Consultants of Austin recently added a new specialist to their team that has great experience with neuromuscular conditions. We were able to meet Dr. Cardon and she talked about SMA. She specializes in neuromuscular conditions, SMA being one of many. If your child has a neuromuscular condition Dr. Cardon may be a great resource for you and your family. She is working closely with the Austin MDA Clinic to help her patients get the services and resources they need.

We talked specifically about what SMA is, and the latest treatment that has been doing amazing things for many SMA patients. While this treatment is a HUGE step forward, Dr. Cardon reminded us all that this is not a cure and the families still need to work with their entire circles to keep therapies, other specialists, etc moving forward as well.

This was our first Tuesday Talks with a Spanish Interpreter as well. We have many Spanish speaking families that we serve and this is something we have been hoping to add for a while now.

If you missed it live, no problem, you can watch the video below.

April 18, 2018 Leave a comment

Researchers and Parents Working Together Meet Research Milestone

Many of you know all about the Casey’s Circle events, our parent training, and the many tools and resources we offer online as well as our bereavement services. Did you know that Casey’s Circle also works with medical professionals to help with research studies? Currently we are working with a group to help define the best standard of care for neonates that experience seizures. We are very excited to announce that this study has been going very well and we recently met a an important milestone.

We received funding from the Patient Centered Outcomes Research Institute (PCORI) to carry the Continued Anticonvulsants After Resolution of Neonatal Seizures study, a large, multi-center observational research study to better understand how to treat seizures in newborns. We also want to understand how the medical treatments for newborn seizures can impact families as their children grow.

Our 9 participating hospital sites and Parent Partners advisory group span from coast to coast. Families were invited to participate in the study if their baby was born at or transferred to one of our 9 study centers, their baby’s seizures began less than 4 weeks after the baby’s full term due date and required medication to treat, and the family speaks and reads English or Spanish.

We are pleased to announce that we have met our recruitment target and have 304 babies and their families enrolled in the study. As we follow these infants and their families through the first two years of their lives, we will learn about how the neonatal seizures and their treatment influence child development, later seizures, and family well-being. We hope the results of this work will help doctors and families of newborns with seizures as they make treatment decisions and will provide clear information about what to expect for the future.

For more information about the study, please visit the PCORI website:
Continued Anticonvulsants After Resolution of Neonatal Seizures: A Patient-Centered Comparative Effectiveness Study

February 26, 2018 Leave a comment

Comprehensive Care Clinic – CCC

The Comprehensive Care Clinic (CCC) shared lots of great information about their history, services they offer, and much more. Laura, one of the CCC social workers even talked about how to get your child started with the clinic. There are a few qualifiers to be a patient:

  • The patient must be 17 years or younger (they do see some older patients, but all new patients must be 17 or younger)
  • The patient must live within 25 miles of the clinic
  • The patient must have 2 or more systems involved (this basically means that they see 2 or more specialists)

If you missed it live, no problem, you can watch the video below.

February 21, 2018 Leave a comment

2017 Holiday Party

On Saturday, December 9th, we hosted our 6th Annual Special Needs Holiday Party. Along with the Palliative Care Team of Dell Children’s Medical Center we gathered families together to celebrate the holiday. This was our first year having 2 parties instead of just one. We had one that was invite only that we kept small for our more complex families, then we had a larger party for all special needs. Both parties were a ton of fun!

Santa had books for all of the kids, and we had gift baskets donated by local organizations as well as some donated by individuals that we were able to hand out to families as door prizes.

This party continues to grow each year, and we want to say a very special thank you to all of the amazing companies and individuals that help us to make this party such a success…

Our gift basket donors:
Neotech Home Health
Legacy Mutual Mortgage
Natalie Z
The Flores Family
The Gill Family (the Gill’s also help make our Angel Dinner special for our bereaved families)

HEB provided all of the food and drinks, as well as the cups, plates, etc and they delivered it all. HEB supports a lot of local charities and we are so grateful for all that they do for us and other organizations like ours.

Houghton Mifflin Harcourt sent Curious George and the Man in Yellow Hat to read the kids some stories. HMH also provided new books, all wrapped, for Santa to hand out to all of the kids that attend the party.

PSA/Epic Healthcare provided all of the crafts for the kids to do, as well as many volunteers to help with the event.

Natalie Ebaugh Photography donated their time and talent to capture many special moments from the parties.

Casey’s Girl Scout Troop 1306 entertained everyone with some carols. Danielle with Roads of Connection Music Therapy led the kids in a holiday music sing-a-long. We had a lot of new volunteers this year as well, including another girl scout troop and a girl’s basketball team. And of course, we could not have a holiday party without our wonderful Santa and all of the individual volunteers that help us with our events.

We are looking forward to seeing everyone again soon!

Check out photos from this year’s parties – Continue to Album

December 12, 2017

Holiday Party 2017

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December 12, 2017

Early Childhood Intervention – ECI

Easterseals shared lots of great information about ECI services. What is it, who benefits, how do you get services started, what happens when your child turns 3? From beginning Early Childhood Intervention services, to transitioning into the school system… all of your ECI questions answered!

Easterseals also shared information on other programs and services they offer. If you missed it live, no problem, you can watch the video below.

November 18, 2017

Home Health

PSA Healthcare talked about ALL things related to home health. If your child may qualify for home health, the different types of home health available, plus much more. We heard about intake appointments, how to get a doctors order for home health, who qualifies, how and if insurance or Medicaid covers the costs, etc. If you missed this talk, but want to know more, check out the video below.

October 26, 2017

Halloween Costume Giveaway & Raffle

We received 150-200 Halloween costumes from Party City through Good 360. These costumes are all styles and sizes- something for the entire family. We have always loved Halloween and this year we are excited to be able to share the love by offering free Halloween costumes to children with special needs and their families.

Date: Saturday, September 23rd
Time: 10AM-1PM
Location: Easterseal Central Texas
8505 Cross Park Dr #120
Austin, TX 78754

All costumes are first come first serve. We will have volunteers on hand to help you find exactly what you are looking for. There will be a space to try-on the costumes as well if needed.

COSTUMES ARE FOR CHILDREN WITH SPECIAL NEEDS AND THEIR FAMILIES ONLY!

Costumes are NOT available to the general public.

For a little extra fun we are also doing a raffle. Aubrey and Taylor from Dallas donated an AMAZING stuffed unicorn. This unicorn stands over 4 feet tall, has a shiny silver horn and fluffy pink mane. It is sure to be your kids new favorite.

Entering is easy…

  • Raffle tickets will be available to families that come to pick up costumes for $1 each.
    $1 tickets are ONLY available during the costume giveaway times!
  • Raffle tickets may be purchased 5 for $10 online (follow the link below)
    Due to fees with credit card purchases online, these are only available in 5 packs.
  • Raffle tickets are available online now until Friday, September 22nd at 10PM.

Buy Raffle Tickets

DISCLAIMER:
Due to the size, we are not able to ship this prize. In order to win you MUST be able to pickup or take delivery in the greater Austin area.

Costumes are for children with special needs and their families only – this is not open to the general public.

Online raffle tickets may be purchased by anyone, you do not have to have special needs to purchase a raffle ticket online.

August 22, 2017

Round Rock Express Game – 2017

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August 18, 2017

Palliative Care

July 18, 2017

We hear the question a lot = “What is Palliative care?”. For our July meeting Rachel, the social worker with the Dell Children’s Palliative Care Team explained what Palliative care is, what they do, who benefits from the services, and much more. If you have a child with complex medical needs, or if you are finding your child going in and out of the hospital frequently you may be interested in learning more about Palliative. We offer a few downloads, resources as well as the video from Rachel’s presentation below for anyone that was not able to join us.

Child care was provided by our wonderful volunteers from PSA Healthcare.

Info graphic (referred to in the video, but not seen in the video)

Handouts/Downloads:
Palliative Care for Children Booklet
Pediatric Palliative Care at a Glance
Palliative Care for Children Booklet (Spanish)
Pediatric Palliative Care at a Glance (Spanish)

Useful Resources:
NIH Palliative Care Information
NIH Palliative Care Information (Spanish)

Did you miss this event? No problem, you can watch the live video.

July 19, 2017

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