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

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

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.

Help Us Celebrate Casey’s 11th Birthday

Casey’s 11th birthday is coming up in just a few weeks. Last year we were still in fog from losing her just before she turned 10. She LOVED her birthday! Every year we would go all out. She loved to see her friends and have a day all about her. We would usually have a party on a weekend near her birthday, and if her actual birthday was on a weekday we would take her to her favorite place for lunch. Casey loved going to Chili’s. We would get her some ice cream; she couldn’t eat food by mouth, but she could taste things on her tongue. She loved to read the colorful Chili’s menu. We have a lot of special birthday memories of her at Chili’s. One year she wasn’t up to going physically so Tim went to Chili’s and got take out. He told them how much Casey loved it there and that she just wasn’t feeling up to coming that year. They gave him a menu to take home so that she could still read it while she was resting. One year she and her nurse made their own Chili’s menu full of all the Casey flair we love so much. We still have both of these menus with Casey’s books.

Shortly after Casey passed away we created Casey’s Circle to serve as her legacy and to continue all of the work she inspired. To celebrate her 11th birthday we reached out to Chili’s. On Wednesday, April 19th, from open to close, Chili’s Round Rock will giving back to Casey’s Circle. You can dine-in or take-out at any time that day at the Round Rock location (2711 S Interstate 35, Round Rock, TX 78664). Be sure to tell them you are there for Casey’s Circle. You can download our flyer and hand it to them, or just mention that you are there for the Casey’s Circle Fundraiser. 10% of every purchase that mentions the fundraiser will be donated to Casey’s Circle. Help us celebrate Casey’s birthday this year at her favorite place. We hope to see you all there!

ChilisGiveBackEvent

Without Words

I have not written a post in a while. Instead of writing I have found myself without words a lot recently. March 10th was the one year anniversary of Casey’s passing. Her service was one year ago on March 16th. Usually I would spend March and April working on details for her birthday. I have been feeling a bit lost recently.

There is not a day that goes by that I don’t wish I could kiss her perfectly chubby little cheeks one more time, snuggle with her on the couch, tuck her into bed, or watch her face light up as she watched her ponies or one of her favorite movies. Tim put together a clip of Casey’s favorite pony getting her wings that he played at her service. That clip has been playing a lot in my memory lately. That as well as the photo/music tribute he created for her service.

Casey used Netflix on her iPad to watch episodes all the time. When I open Netflix all of her shows are still in my queue. Lots of things are still exactly as she left them over a year ago now. We have tried to find new homes for as much of the medical stuff as we can, but all of her favorite things, all of the things that remind us of her, are still very present.

We know many families that have lost a child. Unfortunately in the complex medical world loss is a very real part of all of our lives. Some of these families have other children, or have had to move for one reason or another, and they needed to put a lot of their child’s things away to make room for life. Casey was it for us, so we don’t need to reclaim the space. Some of her friends still come by and they will play with her toys. Everyone grieves differently, and for us we need to still see her things. Eventually that may change, but we are lucky that we don’t have to rush it.

Overall we are doing okay. Some days are really difficult, but we are getting through them. I have decided to write a book, Casey’s story, our story. I am just getting started, but so far it is helping me a lot. Writing about falling in love with her dad, wanting a baby so badly, and finding out we were pregnant and all of the wonderful memories we shared fills my heart. Writing about the birth, and all of the devastating moments helps too, those are part of our story. All of the bad helped us appreciate the good that much more.

Creating Casey’s Circle and keeping her legacy alive through this nonprofit is helping me a lot as well. Casey loved being with other children, and through Casey’s Circle we are able to continue the amazing things she inspired or started in her life.

We have a lot of fun stuff planned over the next few months. Be sure to check out our calendar, Casey’s Friends and Casey’s Angels if you have a child with special needs or if you have lost a child. We are working on setting some stuff up to help celebrate what would have been Casey’s 11th birthday as well. We will post more here soon. We will post on CaseyBarnes.org and our Facebook page as well.

Dream Dinner Fundraiser

Join us for a fun evening. If you have not tried Dream Dinners, here’s a perfect opportunity. You get to prepare meals while also raising money to benefit Casey’s Circle. The meals are yummy and you can customize them to your taste. Don’t forget to bring your cooler or a large bag to carry everything home.

For just $34.99, you will assemble three wholesome meals to take home and enjoy with your family. (one order per household)

Casey’s Circle will receive $10 from every order and 15% of Sides and Sweets sales.

Menu:

  • Fully Loaded Chicken & Potato Soup with Breadsticks
  • Layered Ravioli Bake
  • Penne with Chicken and Peanut Sauce
  • Pub Style Chicken with Mashed Potatoes
  • Swiss Bacon Burgers with Tangy BBQ Sauce

We are offering 2 dates. Thursday March 23rd or Wednesday March 29th both at 7PM. Registration links for each date as well as flyers with full details are available below.

As an added incentive, if I can fill both of our dates Casey’s Circle will be entered to win an additional $1000 donation from Dream Dinners.

Register for March 23rd

Register for March 29th

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty’s wide-reaching readership. We will now have a home on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

Handy Medical Supplies

Over the years we have acquired a LOT of medical equipment and supplies. There is not a room in our house that does not have some sort of medical items stored inside. We have the Vest in the footstool, closet systems in half the closets to house everything from tape and syringes to IV supplies and oxygen.

After Casey passed away we gave away everything that could expire, and then we have slowly found homes for some of the other items. We still have quite a bit of stuff though. Over time I am sure we will get rid of more stuff, but sometimes it actually comes in handy.

Yesterday was a beautiful day. I decided to get some gardening chores done. I was trimming some of the hedges and the trimmers kept sticking shut. I used a limb I had cut to pry them back open. The blade snapped back and caught my knuckle in its path. It didn’t hurt, but I felt the blade connect with my finger so I looked down to see if it was okay. There was a LOT of blood! I ran inside and washed the blood off to see that I had cut really deep. I am accident prone – always have been. It is not uncommon for me to cut into my finger while slicing bread (or whatever). The huge inventory of first aid supplies gets used at least a few times a year. I am a big fan of steri-strips. With a cut like yesterday’s I would typically go right for the strips. However, this cut was through my knuckle so I knew there was nothing I could do myself that would keep the wound closed. If every time I bend my finger I reopen the wound, it will never heal. Ugh!!! I knew I had to go get stitches.

Tim was in his office with the door closed. I could hear him talking, and could tell it was a work call. I didn’t want to interrupt so I got the bleeding under control by applying pressure, cleaned up the blood in the sink & counter, and then drove myself to the ER. As soon as they got me settled in the room, still bleeding, I thought I should tell Tim what was going on. I was worried I may have missed some of the blood during clean up and if he went into the kitchen and found blood and then couldn’t find me that he may panic a little. In case he was still on a work call though I opted to text him instead of calling.

“In case I missed any on my cleanup, and you see blood in the kitchen, don’t panic. I’m fine, just getting a few stitches and then I’ll be home.”

He thought I was kidding. but after I replied with a picture of my finger he saw that I was not. He told me stitches is a valid reason to interrupt work. I guess now I know for next time. The doctor got me stitched up and made sure that I had not damaged the tendon. She said I was the 5th hand injury that day! She said another guy had a very similar wound, just a tiny bit deeper. He has to get surgery now because he did damage the tendon. I guess I was pretty lucky.

She stitched me up and told me that I needed to keep them for 7 days and then get the stitches removed. She listed off different places I could call, but I told her I would just take them out at home. She asked if I had sterile scissors, which of course I do (I have pretty much any medical supply I could need). I told her that I usually just use steri-strips, but because of the location of the wound had to come in for this one. She laughed a little and then had to know why I was so well stocked at home.

I told her a little about Casey, and of course telling a total stranger your child recently passed is always hard, but then she understood where I was coming from. It made sense why I never go to the doctor, why I have so many supplies, etc.

Since the wound is on the knuckle I have a big brace to keep my finger straight for the next few days. I needed to take a shower, so this morning I went back to my first aid supplies and had to rig up a waterproof splint that I could use. I found tongue depressors in our specimen collection supplies and some waterproof tape. It worked perfect!

Of course, if there is a family that needs any of the supplies we have for a medically complex child we will gladly give them away. While they last though, they do come in handy!

Rants from a Woman About to Lose her S***

crazyI have had many moments in my adult life where I have had to step away and take a moment. It just amazes me though how clueless some people really are.

Let’s start 10 years ago. Tim and I were new parents and had a child with more medical issues that we had ever seen. We were learning how to use new equipment, all about the different types of specialists, diagnoses, treatments, etc. Every day was a struggle to keep our sweet little baby alive. Luckily social media was not what it is today- I really don’t think I could have tolerated social media at that time in my life. I would get so angry at friends and family that would complain about things I would have given anything to deal with. Maybe they were complaining that their child failed the driving test, or that little Johnny was almost 3 and they just can’t get him potty trained. Or maybe I would hear someone asking for prayers because they just could not get over a cold and they had a big meeting coming up at work. UGH!!!! Things things don’t matter! I would love to have a big work meeting coming up that I may miss due to a cold- but instead my concerns are over how to keep my child alive.

It took a while, but I eventually learned that people that do not have children with special needs have very different concerns than those of us that do. They don’t know what my life is like and their concerns were not intended to anger me. I eventually realized I was glad they did not know what my life was like. I don’t want other children to have to go through what mine is going through and if they were completely clueless to my concerns then maybe that was a good thing.

Around Casey’s second birthday I finally met other parents of children with special needs. This was a whole new world for me, I could talk about my fears and concerns and these other moms really understood what I meant. It was great, for a little while. Some of the moms have children with very complex needs and I felt like they did understand. However, there were other moms whose children had the label of special needs, but the child was very minimally impaired. I didn’t understand how a mom with ADHD could come into a group with moms like me and complain about her life. Again, her concerns sounded like a walk in the park and something I would have loved.

I took a step back and realized that in the special needs world things are very subjective. What may seem like the end of the world to one family is a breeze to another. However, we all have very similar emotion struggles. We all have a child dealing with something that we can’t simply fix. It’s not a broken bone that will heal, it’s not a cold that will be gone in a few days, we are all dealing with ongoing issues and we can’t fix it. I had to work really hard to appreciate that while their specific challenges (equipment, diagnosis, doctors, etc) may be very different they were hurting as a parent in a way very much like me.

Then came social media. I was so happy to see all of the different ways that the special needs community connected through social media. There were groups by location, diagnosis, general special needs, for school issues, for insurance, over time there has been a page or group for just about anything you can image. I would go to some of the diagnosis specific groups and get very angry. Casey’s diagnosis has varied effect. Some children or very complex and similar to Casey, but on the other end some children have very few issues at all and will be able to live very full and independent lives. When those families would complain I would lose my mind. Do they not know how lucky they are that their child is doing so well?! Then I would have friends (from the special needs community and from other areas of my life) in my news feed. Seeing people post happy celebrations was great. I am honestly happy for them. Seeing people complain about things that simple don’t matter was getting to me again, just like it had early on with Casey.

I had to learn to let things go, I left groups that I felt were causing me more anger than support. I removed some people from my news feed so that we were still friends, but I wouldn’t see their daily rants on topics that I felt were a waste of time and energy. After a while I was able to log on and not get angry.

Over the last year I have had to step back again many times. After we lost Casey in March I have had very little patience for people complaining about petty things. I want to scream at them and tell them that they have no idea what really matters in this world and that they need to be thankful for what they have. Quit complaining! Your family is healthy, you have a roof over your head and food on your table, life is good! Without fail though, people have no idea how silly they sound when they act as if the world is ending because someone messed up their order at McDonalds and the kids cried because they got fruit instead of fries with their happy meals. No, I will not boycott McDonalds with you over this, nor will I share your post and ask my friends to never go there. IT DOESN’T MATTER!

I had to learn to step away again and take a moment. I’m glad that these moms have children that can cry when they get the wrong order. I’m glad that these moms don’t know the pain that I carry with me every day. I wish that no parent ever had to lose their child. For that reason I am able to be happy that these people annoy me so much and make me want to scream at them. It’s still very hard to keep my composure though when I know what really matters in life and how fortunate these people really are.

I guess my perspective has changed a lot over the years. Casey has taught me to be thankful for everything and she has taught me what really matters in life. I like to think that if she had been healthy and my life had been different that maybe, just maybe, I wouldn’t be one of these clueless moms that drive me crazy. I hope that I would be one of the more compassionate and caring people.

If you have a friend or family member with a child that has special needs, or one that has lost a child. Try to keep that in mind. You don’t have to edit everything you say, but try to appreciate what you do have. We all have bad days, and we are all going to complain about things from time to time. Take a minute and realize what matters most to you. At the end of the day if what matters most is still there, it’s not that bad.

Well Said, Judd Apatow

I recently read an article on the New York Times about an interview with Judd Apatow. It was an interview discussing his response over some Trump tweets. The article itself was not about special needs at all, but something in his article really resonated with me.

“There’s a danger on the internet that you think you’re accomplishing something,” he says. “So you see an article about a disease and retweet it and think ‘It’s cured now!’ And you’ve fooled yourself into thinking that you’ve done something productive.”

It seems like every other day I see one of my friends or family members share a post on Facebook that says something to the effect of “Every like get $1 to charity X” or it is a picture of a child with special needs and some horrible story of them being bullied or shun and the post will be begging for likes to show this person they are beautiful. Many of the people in the photos have never given their permission to be used, and the posts claiming to raise money rarely if ever actually do so. Yet, time after time, the post are shared and people go on to think they just saved the world.

There has to be a way as a society that we can fix this. Instead of making negative or false things go viral, lets all volunteer our time for a cause we believe in. Or if you don’t have time to donate, donate money, or promote an organization that is doing something good. Let’s quit wasting our time and effort on things that yield no response and instead lets work together to do REAL GOOD.

The article continues and toward the end Apatow goes on to say:

“I’m trying to transition from making comments on social media to choosing one or two organizations to work with and support so that I feel like I’m actually being a positive part of the process. You don’t want to be a crank.”

Let’s follow his lead and all try to be part of positive change. Well said, Apatow!