In this week's episode, we learn more about Selective Dorsal Rhizotomy by speaking with Shannon Kulesa, the mother of Jake.

Jake is a twin, born early and with cerebral palsy. Shannon and I discuss Jake's SDR journey, how she found out about the surgery, the decision-making process, how they chose a hospital and provider, and what Jake's life is like now. 

This week we learn all about Cerebral Palsy with the Director of Communication for The Cerebral Palsy Alliance Foundation, Jocelyn Cohen who also has CP.

We discuss the different types and ways to categorize CP, different treatment options, what it was like growing up in the 80s and 90s with CP, how adults with CP navigate their world, the role of caregivers, different ways to connect with other CP patients and caregivers, what CPARF is currently researching, how to make an impact on CP research, the economic burden of having CP, and more.

Important Links
The Cerebral Palsy Alliance Research Foundation
Faces of CP
PTwithCP
CPSoccer
Texas Cerebral Palsy Connection
United Cerebral Palsy
American Academy of Cerebral Palsy and Developmental Medicine
Center for Disease Control
Headstrong Art
Hou To Guide on Instagram
Hou To Guide on Facebook
I've Got 99 problems, but Palsy is just one: Maysoon Zayid TED talk

Today is Declan's 1 year SDR anniversary. In honor of this day and the huge milestone it is, we will kick off our SDR series beginning by telling Declan's SDR story.

We go over what SDR (selective dorsal rhizotomy) is, the selection process for St. Louis Children's Hospital, our personal journey to making this decision, and the how the surgery went for Declan.

Important Links
What is SDR- St. Louis Children's Hospital
St. Louis Children's Hospital Center for Cerebral Palsy Spasticity
Texas Children's Hospital
Gillette Clinic Specialty Healthcare
Selective Dorsal Rhizotomy Facebook Group
Interview with Paige Flamm
Hou To Guide Instagram Account
TSA Cares Travel Assistance

In part three of our series on our recent vacation to Colorado, we cover the place that started it all: Great Sand Dunes National Park. We love this less-traversed park so much, we had to devote an entire episode to it.

We discuss our most current adventure there, as well as our "side trip" there last summer. It was there we first realized most places try really hard to be accommodating to mobility-challenged travelers and that made us realizing traveling and camping and hiking with our son who has CP was possible.

Our love affair with this often-overlooked park is detailed here.
Important Links
Great Sand Dunes National Park
Zapata Falls Trail, AllTrails
Sangre De Cristo Mountain Range
San Isabel National Forest
Rio Grande National Forest
Recreation.gov
Sand Board Rentals
Medano Pass-the road connecting the North and South Entrance
Rocky Mountain National Park
National Park Information-TheHouToGuide.com
America The Beautiful Access Pass Information-TheHouToGuide.com

In part two of our 4-part series focusing on our recent trip to the CO Springs area, we review even more activities including zip lining at Seven Falls, hiking Rainbow Gulch in the Pike National Forest, horseback riding at Old Stage Riding Stables, and dining out in the time of COVID at Phantom Brewing Company.

We discuss the affordability of these activities as well as their accessibility in hopes of helping all families, but especially special needs families plan memorable trips to one of our favorite places.

Important Links
Zipline at The Seven Falls
Seven Falls
Horseback Riding at Old Stage Riding Stables
Rampart Reservoir via Rainbow Gulch, AllTrails
Pike National Forest
Woodland Park, CO
The Broadmoor
Visit Pikes Peak Pike

In the first episode of this four-part series, we get back to travel. We discuss the first few days of our recent trip to Colorado Springs that was shared with relatives from Missouri.

We go over the drive (which is our tip for this week: DRIVE AT NIGHT WHILE KIDS SLEEP), Pulpit Rock, Vindicator Valley Trail, Canon City, and The Royal Gorge Bridge Park. Not only do we give some overviews of these destinations, but also dive into the accessibility of each.

We also want feedback from our listeners: does this format work? What are some places we should check out in the Colorado Springs area? What are some areas or parks or destinations you want to learn more about?

Important Links
Pulpit Rock Trail, AllTrails
Gold Mine Trail: Vindicator Valley Trail
Garden of The Gods
Royal Gorge Bridge
The Hou To Guide on AllTrails
HashtagColoradoLife: Cripple Creek episode
HashtagColoradoLife: Colorado Springs episode 

This week, we interview Paige Flamm of Utah. Paige is the mother to 7 year old Kinsley and she talks with us about Kinsley's diagnosis of Holoprosencephaly (HPE) and the CP that is a result of that diagnosis.

She also walks us through her daily life as a special-needs parent and her journey to getting her daughter approved for selective dorsal rhizotomy( SDR).

Paige runs a successful home, life, and special-needs parenting blog and Instagram. You can read more of her work at thehappyflammily.com or follow her on Instagram @thehappyflammily. 

Important Links
The Hou To Guide
The Happy Flammily
2019, Advocating Moms Conference, Salt Lake City
Utah Parent Center
National Forests, by State
Legoland-California Resort, Disabled Guests
Seven Accessible Beaches in San Diego
Early Intervention: "New Guidelines for Eariy Diagnosis of Cerebral Palsy" article from The Cleveland Clinic
National Organization of Rare Diseases information on HPE
Willow's CP Journey
SDR Information
Families for Hope: Holoprosencephaly Support Group

This week, we dive into what cCMV is by speaking with Dr. Gail Demmler-Harrison of Texas Children's Hospital and Baylor University. We also touch on some of the biggest strides in cCMV research and review some prevention tips.

Dr. Demmler-Harrison is the foremost expert on cCMV and is a board certified Infectious Diseases Doctor.

She has been studying cCMV for the length of her medical career.

Important Links
Texas Children's Hospital
Baylor University College of Medicine
Dr. Demmler's TCH Profile
Dr. Demmler's Baylor College of Medicine Profile
Congenital CMV Disease Research, Clinic & Registry Facebook Page
CMV BCM Twitter Page
"Cytomegalovirus: The Virus All Pregnant Women Should Know About Now" by Dr. Gail Demmler
The National CMV Foundation
American College of Obstetrics and Gynecology
CDC
WHO
Maddie's Law article
Texas State Bill 791