Episode 189 | Ryan's Story - A son with Costello Syndrome

 

My special guest is Ryan Sheedy

Meet Ryan Sheedy, an incredible father who, much to his own surprise, found himself immersed in the delightful chaos of caring for twin boys. His world drastically transformed ten years ago, when he moved from Pennsylvania to Bentonville, Arkansas. Not only has Ryan navigated the unexpected challenges of parenting twins, but he has also bravely navigated his son's Costello Syndrome diagnosis. Through it all, he's embraced being a stay-at-home dad, constantly learning, adapting and conquering unforeseen hurdles.

We can plan as much as we want to plan, but it's out of our control. We have to go with the flow. - Ryan Sheedy

In this episode, you will be able to:

Delve into the heartening and daunting experiences that fathers encounter in the NICU, shedding light on their tenacity and determination.

Grasp the profound impact support and open communication can make in navigating the NICU's challenging landscape.

Understand better the diverse responsibilities fathers shoulder as caregivers and staunch advocates in their children's healthcare journey.

Comprehend the rollercoaster ride of emotions and experiences that encapsulate being a stay-at-home dad and the head caregiver.

Get introduced to 'Mijo', a versatile web app offering an efficient solution to

The importance of communication and support in the NICU cannot be overstated. It anchors not only the medical care of the infant but also the emotional well-being of the parents. Ryan’s story emphasizes how a strong support network, open communication with healthcare professionals, and sharing information with family and friends can make a significant difference in this intense journey.

The key moments in this episode are:
00:00:05 - Introduction,

00:01:08 - Guest Introduction,

00:09:29 - NICU Experience Begins,

00:11:55 - Early Days in the NICU,

00:12:55 - Ongoing Relationship with Care Team,

00:15:12 - The Separation,

00:16:49 - Perspective and Gratitude,

00:21:33 - Breaking the Mold,

00:24:29 - The Challenges of Caregiving,

00:28:35 - My Mejo App, 

00:31:47 - The Genesis of Mejo,

00:35:59 - Who Can Use Mejo?,

00:38:34 - Moments of Care,

00:40:38 - Building a Community,

00:43:20 - Lessons Learned

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

Give medicine to your child without it becoming a wrestling match Prepare your child (and yourself) for a shot so they can feel less anxious Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Feel empowered with Child Life On Call's Mastering Immunizations: Expert Tips to Prepare, support and respond like a Child Life Specialist  Course for Parents, Child Life Specialists and Clinicians! 🌈👨‍👩‍👧‍👦💉 

It is the only course you'll ever need to be able to prepare, respond and support your child at any age and stage for immunizations. Evidenced-based tips from a child life specialist who has been supporting kids through painful procedures for 13+ years. This offer will only be available for a limited time. Pre-order your course today here!

 

My special guest is Ryan Sheedy

Meet Ryan Sheedy, an incredible father who, much to his own surprise, found himself immersed in the delightful chaos of caring for twin boys. His world drastically transformed ten years ago, when he moved from Pennsylvania to Bentonville, Arkansas. Not only has Ryan navigated the unexpected challenges of parenting twins, but he has also bravely navigated his son's Costello Syndrome diagnosis. Through it all, he's embraced being a stay-at-home dad, constantly learning, adapting and conquering unforeseen hurdles.

We can plan as much as we want to plan, but it's out of our control. We have to go with the flow. - Ryan Sheedy

In this episode, you will be able to:

Delve into the heartening and daunting experiences that fathers encounter in the NICU, shedding light on their tenacity and determination.

Grasp the profound impact support and open communication can make in navigating the NICU's challenging landscape.

Understand better the diverse responsibilities fathers shoulder as caregivers and staunch advocates in their children's healthcare journey.

Comprehend the rollercoaster ride of emotions and experiences that encapsulate being a stay-at-home dad and the head caregiver.

Get introduced to 'Mijo', a versatile web app offering an efficient solution to

The importance of communication and support in the NICU cannot be overstated. It anchors not only the medical care of the infant but also the emotional well-being of the parents. Ryan’s story emphasizes how a strong support network, open communication with healthcare professionals, and sharing information with family and friends can make a significant difference in this intense journey.

The key moments in this episode are: 00:00:05 - Introduction, 00:01:08 - Guest Introduction, 00:09:29 - NICU Experience Begins, 00:11:55 - Early Days in the NICU, 00:12:55 - Ongoing Relationship with Care Team, 00:15:12 - The Separation, 00:16:49 - Perspective and Gratitude, 00:21:33 - Breaking the Mold, 00:24:29 - The Challenges of Caregiving, 00:28:35 - My Mejo App,  00:31:47 - The Genesis of Mejo, 00:35:59 - Who Can Use Mejo?, 00:38:34 - Moments of Care, 00:40:38 - Building a Community, 00:43:20 - Lessons Learned

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

Give medicine to your child without it becoming a wrestling match Prepare your child (and yourself) for a shot so they can feel less anxious Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Feel empowered with Child Life On Call's Mastering Immunizations: Expert Tips to Prepare, support and respond like a Child Life Specialist  Course for Parents, Child Life Specialists and Clinicians! 🌈👨‍👩‍👧‍👦💉 

It is the only course you'll ever need to be able to prepare, respond and support your child at any age and stage for immunizations. Evidenced-based tips from a child life specialist who has been supporting kids through painful procedures for 13+ years. This offer will only be available for a limited time. Pre-order your course today here!