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Upon learning about two-and-a-half-year old Titus Daily’s many medical conditions, it was tempting even for his parents, Becky and Paul, to think that the situation might be hopeless – that their fifth son would never be able to function in any meaningful capacity.
However, the care Titus’ has received at Our Children’s House at Baylor in Allen (OCH Allen) has ensured that his case is anything but hopeless.
Many special needs children are diagnosed in utero, giving families time to prepare themselves for the hardships to come. But Titus Daily’s medical complications didn’t begin to manifest until moments after birth.
“When he was born, he wasn’t breathing, and they were having trouble intubating him,” explains Becky Daily. “That’s when we first discovered something was wrong.”
It didn’t take long for the medical team to diagnose Titus with micronagthia – his jaw was pushed back, blocking his airway.
Over the course of the following months, Titus also was diagnosed with: cleft palate; ASD/VSD (a heart condition); a single, horseshoe-shaped kidney; profound deafness; glaucoma; malformed optic nerve; hemi-vertebrae (extra spinal bone causing scoliosis); low muscle tone; feeding problems; Dandy-Walker variant (a brain malformation); and the list goes on.
Titus was only weeks old, but it was already clear that he’d need a lifetime of intense therapy. The Daily’s didn’t know where to turn.
“Some of the nurses in the NICU were the first ones to mention OCH to us. They just kept saying it was a great place,” says Becky.
The recommendation was high praise from nurses who worked for a Baylor competitor.
"When we went to Baylor Our Children’s House, it was like someone threw us a lifeline. I finally felt like we were somewhere where the people weren’t so surprised to see him,” Becky continues. “The staff wasn’t astonished by him. They’ve seen it all before. It’s really a place where families and kids like Titus go and can feel normal there.”
Titus was eight months old when he began receiving therapy at OCH Allen. Becky still fondly remembers the initial evaluation process.
“There was so much he couldn’t do, but they were able to begin to do things with him, and he didn’t scream or cry. I was just touched by the way they cared and treated him like a normal child and not just someone who couldn’t hear or see.”
Titus has been at OCH Allen for two years, where he receives occupational therapy, feeding therapy and his favorite, physical therapy. He loves working with his PT specialist and looking up and giving her a big grin whenever he accomplishes something that probably wouldn’t have been possible without the OCH team.
And he has accomplished a lot. He can roll over, prop himself up on his elbows, lift his head and eat pudding.
However, his biggest achievement may be yet to come. Titus is now working with a gait trainer during physical therapy, which could lead to a giant step – literally.
“There is the possibility that he’ll walk,” says Becky, “and I never dreamed that he’d be able to walk.”
Beyond the onsite therapy Titus receives, OCH Allen has educated the Daily’s on how to work with him at home, and even took care of ordering the special equipment he needs. Parental and family involvement is a cornerstone of every OCH child’s care plan.
“OCH has given us hope. They’ve given us a direction and a plan and things we can work towards.”
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