Telethon

OK, so 2020 is off to a phenomenal start for the small boy! I’ll share one of the four *giant* things happening for Miller, and I’ll tease you a bit more to say the next of which kicks off on February 1, so watch out world – Miller David is making waves!

As I’ve briefly alluded to before, Miller is in a handful of therapies each week that have helped him gain the independence he loves. At birth, he received therapy in the NICU at Hendrick Medical Center. I know you’re probably thinking – therapy? In the NICU? It was mostly stretching to increase his range of motion since having been squished in there with little fluid and he hated it. Once he came home, we started outpatient therapy at Hendrick’s rehab facility. At four months, his therapist felt he was meeting his developmental milestones and he was released from therapy.

Enter JoBeth Huber-Willis. I knew of her through my job at the time. She’s a physical therapist and the Director of Pediatrics at West Texas Rehabilitation Center in Abilene. I called her and asked her to evaluate Miller. We were concerned about his development. He was a preemie, but it seemed to be more than that. He was around six months at the time – summer of 2017. She checked him out and told us she wanted to see him weekly for the foreseeable future. Cool. Great. More therapy. He’ll outgrow it and catch up, right? Right. Nothing to worry about here!

Then the hospital stay of 2017 happened. Our pediatrician raised concerns about his low muscle tone and delayed development (told ya) and scheduled an appointment with Children’s Medical Center in Dallas that August. We went, but they seemed relatively unfazed. (They being a neurologist, physical therapist, and nutritionist.) Labor Day weekend of 2017, we noticed Miller experiencing some odd spasms. LONG story and lots of frustration later, we ended up in Dallas at Children’s for testing and stayed four days. It was the worst few days of our lives up to that point. An MRI revealed lesions on his brain, specifically his basal ganglia. The neurologist came out and told us it was most likely a mitochondrial disease and the odds weren’t in our favor. The same doctor ordered labs called Whole Exome Sequencing on all three of us to help pinpoint the diagnosis. We didn’t get the results until February 2018. Talk about torture – waiting from early September to late February with little-to-no information and what we did have wasn’t good.

OK so back to therapy: From the summer of 2017 at six-ish months until now (32 months later), he’s received an increasing amount of therapies each week at West Texas Rehab. We also enrolled him in Early Childhood Intervention (ECI) for additional therapies provided by the State of Texas. Needless to say, Mill was getting A LOT of therapy there for a while. And it made a big difference! He has had a great community around him that know him and push him in his abilities while loving him.

VIDEO: JoBeth and Miller laughing

West Texas Rehab has been a constant in our lives for 2.5 years now. We go three days each week for four different therapies from four therapists. Their close-knit team works as one to achieve the most important goals for the kids there and all while creating an environment in which we all feel welcome. Over a year ago, JoBeth told us about Rehab’s Donor Sponsorship program. With our bills from Children’s, Hendrick, our pediatrician, medications, and therapies out the wazoo, we were struggling. Hell, we still are. We applied and were granted partial sponsorship for Miller’s therapies at WTRC. After six months, we had to reapply and were granted FULL coverage. Y’all, it’s huge. Insurance has limits and we were blasting past ours at record speed. Not to mention, in 2018 alone, Miller got TWO pairs of orthotic braces (from WTRC I’ll add!). TWO. The kid wouldn’t stop growing, dangit! Kidding. We shelled out more money for those and it adds up. The donor sponsorship has been such a blessing to our family.

Have I convinced you WTRC rocks? If not, hear this: Miller is going to be featured as one of the poster-kids, if you will, on Saturday during the 50^th Telethon. On live television. A reply card went out to all previous donors with Miller’s picture on it. An article about Miller was mailed out with the reply card with more pictures and quotes by JoBeth, Josh and me.

Rehab’s largest annual fundraiser is this Saturday, January 18^th, televised live from the Abilene Convention Center. The telethon and auction raise more than $1,000,000 annually, making it possible for the West Texas Rehabilitation Center to serve more than 650 patients each day regardless of financial circumstance, including our Miller. And I gotta mention it’s sponsored in part by our friends at Black Plumbing!

WTRC asked if we would be willing to share Miller’s story, and we jumped at the opportunity to sing Rehab’s praises. We’re thrilled to share how far he’s come with the love and care the team at WTRC has provided our family.

A few fun facts:

• West Texas Rehab was established in 1953 as a private non-profit outpatient rehabilitation center and has become one of the largest, most comprehensive facilities of its kind in the nation. 
• In 2019, WTRC saw over 650 patients each day and worked with over 900 physicians.
• West Texas Rehab operates facilities in Abilene, San Angelo and Ozona.
• This year marks their 67th year.
• Oh, and have you seen Miller’s snazzy new wheels? Those are on loan indefinitely from Rehab. JoBeth coordinated everything. It has made all the difference in his life. In OUR lives. He is mobile. He can play with toys because he can REACH toys. He an attempt to open doors (thanks a lot, JoBeth ;). And he can run into things… Facepalm. But he’s independent, and that is everything.

SO, if you find yourself inclined to watch our boy grace the stage for such a cause as this, set a reminder to tune in at 7PM on Saturday – THIS Saturday. You can watch it on TV stations in Abilene (KTAB), San Angelo (KLST), Corpus Christi (KRIS), Midland/Odessa (KOSA), Lubbock (KAMC), Amarillo (KFDA), Waco/Temple/Bryan (KWTX), and Lawton, OK (KSWO). The show will also be streaming live at WestTexasRehab.org.   

Along with Miller’s cute face, you’ll be entertained by:

• Neal McCoy and Lindsay Ell, the featured entertainers
• Charlie Chase, host since 2001 and longtime co-host of the popular “Crook and Chase” talk show on the Nashville Network
• ESPN Rodeo reporter and Wrangler rep Jennifer Douglas Smith and Braid Blanks live with patient stories and interviews from stage – WINK! WINK!
• Texas legend and cowboy poet, Red Steagall, with The Boys in the Bunkhouse
• Rion Paige of X-Factor Fame – look for Miller on stage here, too!
• Brad Maule from General Hospital

And if you’re local, there are special activities will be set up for kids in the foyer area of the Abilene Convention Center and food in the exhibit hall.

We love our West Texas Rehab Center and they love our boy. Don’t forget to check back February 1 for more exciting news, but until then, see ya Saturday!