Callahan Cathro -Cal's Cru, Inc.

Cal's Story:

Callahan Cru was born on June 20, 2022. One day before Vivi’s birthday. After a perfectly fine birth, Cal became sick 5 days later with Parechovirus which led to meningitis and he was diagnosed with Hypoxic Ischemic Encephalopathy (HIE), which means there was lack of oxygen and restricted blood flow to his brain. Cal suffered severe, global brain damage. Being told this was a punch in the gut, it literally takes your breath away. You stand there looking at the MRI hearing the doctor talk but nothing sticks, you can't listen to his words. All you can think is one, thank God he is alive and second, which is a pretty close second, is how is this going to impact our lives.

Cal’s Diagnoses:

Callahan suffered a hypoxic brain injury. Cal has a diagnosis of Hypoxic ischemic encephalopathy(HIE), spastic Quadriplegic cerebral palsy (whole body affected), global developmental delay, and cortical vision impairment (CVI). Cal is blind. We have recently started to refer to this as blind as opposed to CVI. For one, because it is. CVI is the leading cause of blindness in children. And two, it is easier for others to understand how to interact with Cal. He loves singing, laughing, and touch- (especially head massages).

It is also very common for people with quad spastic CP to not be able to verbalize, have a low IQ. We realize Cal may never be able to use his expressive language the same way we do due to the motor impact. In addition, it isn’t uncommon for these kiddos to not be able to sit up by themselves ever. I think out of everything this is something we’re determined to reach for Cal. We want him to be able to communicate with us and hold himself up sitting. This will give him so much more freedom.

What we wished we knew about being a parent to a child with a traumatic brain injury:

You’re going to get the MRI results and hear the list of never evers. Never walk, talk, see. What you hear is never play little league, never get married, and never drive a car. You’re going to think your life is over. The life you were in control of is. The life God had planned for you isn’t. The ICU neurology team is going to tell you to take your child home and love them just like your other children. You will think okay, easy, done. What’s next? You will ask the question: the brain can heal, right? They will fumble with their words. They will tell you therapies- PT, OT, and Speech. That’s it.

When you get home, you’re going to need a therapist for yourself. A therapist with some street credit. Someone who has experienced grief, ambiguous grief, and trauma. You will know this within the first few minutes of talking with them.

You may need an antidepressant. It may make you feel worse at first. It will be a rollercoaster but hold on- it will be worth it.

You may have to relearn tasks that are second nature. Your brain is having a hard time processing what is a threat and what is typical life. Everything is tangled.

You’re going to have to figure things out. Who could watch your medically fragile child at 3mo who you are monitoring for seizures. It will be you. You will quit your career, rely on one income, and navigate the bizarre financial world of having a child with medical needs. You will do whatever it takes. You will serve tables at night. Your husband may ask his boss if he can also serve tables on the weekends. You hopefully will have family that will sacrifice their Saturday nights to help you. You will find the silver lining- it will be your date night.

You’re going to need to throw every timeline you’ve ever known to be true out. The milestone timeline, family planning timeline, career timeline. It’s not the same. Parts of you are the same and always will be but a lot is different now. You will attempt to learn mental flexibility.

You’re going to show up to your first post ICU stay with your child at the hospital that completely broke you. The first of many appointments. They may tell you we’re going to wait it out, give him time to develop. You will feel relief, for a second. It can’t be that severe if we are waiting it out. You will switch to another neurology team immediately. There is no time to wait. Cerebral palsy is a brain injury. You need Medicaid as your secondary insurance to help pay for copays and equipment that insurance may cover (gait trainer and stander). You need the diagnosis.

You won’t have any connections to other families that have experienced a brain injury or specifically the brain injury that your child suffered. You will stalk all families with children who have suffered a brain injury on social media. You will become so engulfed that when typical children appear on your timeline you are repulsed. You will remind yourself that you also have another child who is walking, talking, and seeing.

You will then begin your PhD in neurology. You will realize you know more about treatments than the amazing doctors at the hospitals that surround you because it’s your child, not theirs. And you’re living it, they’re not. You will then be educating and providing knowledge to your neurology team for them to pass on to other families- you hope.

You will need thick skin. You’re going to need to get used to the can’t imagines, that builds character, and everything happens for a reason. These are protective mechanisms. If you can’t imagine, then it can’t happen to you. And remind yourself that you were that person before too.

Then, God will lead you to the people that can imagine. These people will forever be a part of your life. You will meet your own Ronda Johnson’s, Tim Siegel’s, Joy and Dustin Schwobe’s. It will be so cathartic. You will be bonded to them forever the first time you hug them. Then you’ll continue to hug these strangers instead of using words because words aren’t needed.

Ryan and I had the complete honor of attending the Team Luke Hope for Minds Conference in Texas September 2023. We would love for everyone to know who Luke Siegel is and the mission of Team Luke Hope for Minds.

Team Luke supports families who have children that have suffered severe traumatic brain injuries after birth. They have supported Ryan and I, a family that lives on the east coast. They paid for our flights, hotels, rental car, and food to attend the conference along with so many others. They have given families over $500,000 this year for medical treatments. They have given Cal $5,000. They give parents connection and hope.

Cal’s Schedule:

Physical Therapy/Dynamic Movement Intervention (DMI) at Johns Hopkins- Once a week with Ms. Kerry.

Physical therapy at our local hospital twice a week with Ms. Christine and Ms. Cara. Soon starting Occupational therapy there as well.

Speech therapy once a week with Ms. Jen.

Infants and Toddlers - physical and occupational therapy, once a month, with Ms. Tracey, Ms. Brittany, and Ms. Tori.

MD School for the Blind, twice a month, w/ Ms. Erica and Ms. Brittany.

Ophthalmologist appointments with Dr. Rupka at Hopkins.

Mind Eye Institute appointments in Chicago at least once a year.

Cal is a graduate of feeding therapy at Kennedy Kreiger with Ms. Gayle.

Ryan speaks with our medical insurance rep, Pia every Tuesday. She helps us navigate our insurance claims.

Cost of treatments and therapies

The medical world has abandoned neurological conditions. But in the past 10 years, treatments have emerged for children like Cal. Unfortunately, insurance doesn’t cover these brain treatments and some therapies because it is still so new. Here are some of the treatments/therapies/equipment we want Cal to have:

The Neurological and Physical Abilitation (NAPA) Center has locations all over the US and the World. We are going to the Boston location this month for his 3 week intensive physical, occupational, and speech therapy. Cal will receive 3 hours a day, at least, of treatment each day. We are hopeful insurance will cover some of the treatment. The cost is $170 per therapy, per day. In addition to housing.

Trexo Robotics is a technology that allows kids the ability to walk with help from the robotic legs. We want this for Cal. Being upright is a human right to us. Movement has been proven to help prevent GI issues and hip surgeries for kids with spastic quad CP. It isn’t uncommon for kids who are whole body affected to have hip surgeries. We want to minimize this as much as we can for Cal by being upright and bearing weight. We are getting a pair of the Trexo legs this summer as a rental. The cost to rent these legs is $1,000 per month; to buy in full, they range from $34,500-$40,000. We are planning on renting one for a couple months with hope to show our insurance Cal needs this and then they may cover some of the cost for future rentals.

The Mind Eye Institute in Chicago. We went for his initial consultation and exam in July 2023. He was examined and given prism goggles and “Brainwear glasses”. The prism goggles are used to affect the way the light interacts with his brain. And the glasses are to help with his peripheral vision which will help with balance and coordination. This is one way to try to improve his CVI, because like we said he will never not have it but it can be improved. The cost for this appointment was $3,500 and each visit after is $900, not including travel or lodging. We have noticed a difference in Cal’s awareness since getting his glasses.

Total Wellness Medical Center in Surprise, Azriona. Dr. Proefrock specializes in stem cell treatments that have had major impacts on other people with brain injuries. The cost per session is $7,500, not including travel and lodging.

Hyperbaric Oxygen Therapy is a medical treatment that enhances your body’s natural healing processes. It consists of increased pressure and increased oxygen. Oxygen is integral for healing. HBOT can be used to treat a wide variety of medical conditions, including stroke and cerebral palsy. We want to get a HBOT chamber for the house to help the healing of Cal’s brain and to allow more neurons to create new paths or reconnect to other parts of the brain. The cost for this varies from about $8,000-12,000.

Neurosolutions of Austin. Dr. Crawford, is a one or two week intensive therapy program that includes a laser therapy that is the cutting edge of science. They use a specially designed laser in connection with platelet-rich plasma (PRP), to give patients a non-invasive alternative to traditional medical interventions. The cost for this is $27,500 (the two week intensive with LPRP), not including travel or lodging.

These treatments and therapies are costly and have long waitlists because they are top of the line. We have already had a telehealth appointment with Dr. Crawford and his team and also talked with them when we were in Texas. Dr. Crawford wants to work with Cal. We are looking to go in February/March.

With this being said, kids with cerebral palsy and blindness turn into adults with these conditions. There is no cure BUT there is neuroplasticity. Neuroplasticity is the highest between 0-2 years old. Neuroplasticity will always exist but this is when it’s at its peak and we have witnessed it first hand. In Cal’s early months, he wasn’t able to lift his arms from his side. His fists were clenched and we would have to work on prying them open everyday. He was unable to lift his head off the floor. He had “no facial affect” on his medical chart and we feared he never would express a smile. But, he did and now his smile is so contagious. Everyday with Cal is purposeful in a way that is so different from a typical developing child. We want to optimize Cal’s neuroplasticity so we choose to get to work everyday. And we hope to go to these intensives and get these treatments done to further Cal’s neuroplasticity.

Lastly, we don’t want people to think of Cal’s life as sad. Because we don’t. We love our life, it’s just different than before. We have had to adjust and grow. We know what happened to Cal is incredibly sad and we don’t know if everyone will have an experience like that in their lifetime. But we do know you live your life at a different frequency when you know extreme pain. Up until Cal, we had never lived that level of pain and we are still working on navigating that.

We have big dreams for Cal’s Cru Inc. We don’t know where it will end up but we dream of helping others like us one day. Cal was supposed to sit on his own, walk, talk, and see until he suffered a brain injury. He was going to do everything in the same capacity as his sister. More than these milestones, is Cal’s legacy he will leave behind. Cal gets to work every single day with the chance that he’ll never be able to accomplish these things in his lifetime. And as human beings, we don’t think there is anything more inspiring than that. Callahan Cru is our inspiration.

Love,

The Cathro's