Blake's young life: Pills, hugs and hope
Blake Leritz lives in his own world. His four years of life have been punctuated by countless surgeries, trips to the hospital by air flight, ambulance and car.
He's on a special diet to control his seizures.
And then there are the pills. Lots of them he depends on to keep going. They are his lifeline.
He was born with Wolf-Hirschhorn Syndrome, an affliction of people born without their fourth chromosome, or only part of it.
Like other patients with his rare disorder, he was born with a cleft palate, water on his brain, a swallowing dysfunction, epilepsy and delayed development.
Blake's delayed growth began in the womb.
He must feed through a tube, a high fat diet to keep him nourished.
His little muscles are not developed, but he's working on them. He wears leg braces and orthopedic boots in bright child colors.
"He is profoundly disabled," said his loving grandmother, Brenda Sordahl. Sordahl and husband Dave took Blake when his young parents became overwhelmed by his needs and the medical issues that became all consuming.
Blake has two siblings in the region. His grandparents reasoned they could give him more extensive care, so the Park Rapids couple stepped in,
Brenda hires nurses to help her during the daytime. Blake is on Medical Assistance.
Scooting and seizures
Thursday his nurse had Blake practice scooting across the floor on a specially designed rolling cart to build up his leg muscles. He was rolling toward his favorite toy, a drum-like invention that plays music and lights up bright red dots.
He loves music and bright lights.
His little wire rim glasses are necessary for eye problems associated with his disorder.
When he's happy, he lets you caress his hand. He hums a few notes repetitively.
When he's stressed, he whimpers and frets like a baby - repeatedly.
He generally seems happy and his seizures have become more controlled on a ketogenic diet, one high in fats.
He has what Brenda Sordahl calls "infantile spasms," a jerking of his hands and arms upon waking.
His new padded hospital bed with a meshed screen will keep him safe at night. It prevents him from injuring himself in the corner of his old crib or falling out of bed. Now his grandparents can sleep better at night, although Blake does occasionally get up in the wee hours of the morning.
It's the cluster seizures that are the scariest. His eyes roll back, he tenses up and he quits breathing.
It usually results in a trip to the hospital.
He used to have those every three to five days until his new diet seemed to bring them under control. Now when he gets the cluster seizures, he's given Valium to break the cluster cycle.
He takes Clonazepam to control the daily seizures.
Last summer he got pneumonia. He goes to Children's Hospital in St., Paul when things get bad. A doctor there is studying his condition.
During those 16 day of hospitalization, he was on life support.
He pulled through.
When he and his grandparents returned home, Brenda began to notice things out of place. His pills, which should have been remaining in constant supply while he was in the hospital, were disappearing.
By August, the supply was getting alarmingly low. The Sordahls asked Blake's part-time nurse where the pills were disappearing.
"She denied taking them," Brenda recalled. "She said, 'I would never endanger Blake that way.'"
The Sordahls let the matter drop. The woman loved Blake and the family had other people in and out of the house. Anyone could have taken the pills, and Brenda's pain medication.
But Brenda saw signs the nurse was not functioning well and she became concerned for the woman - and for her grandson who needed his medications.
There were simply not enough pills.
By the end of the year, Brenda was counting the pills daily and noticing they were still disappearing.
After another hospitalization, in which Blake's pills again dwindled in number, Brenda called the Hubbard County Sheriff's Department.
Deputies were going to install some surveillance equipment, but Brenda decided she couldn't wait. She hooked up her own Web cam and confirmed her worst fears.
The tape caught the nurse allegedly stealing Blake's pills.
And it also confirmed the daily count of pills Brenda was doing. The number of pills left didn't mesh with what Brenda knew she was dispensing.
This grandmother-turned detective handed over the evidence to the sheriff.
Monday, Celeste Anne Kruft, 31, of Menahga, was arraigned on a felony charge of theft. She is charged with stealing little Blake's medications. But the complaint only details the two pills caught on camera.
Her next appearance in Hubbard County District Court is next month.
The situation saddens Brenda because Kruft was a loving and kind caretaker.
But then Brenda remembers the times they needed to drive the nurse home.
An aura of sweetness
Blake's day-to-day crises necessitate his having his medications readily available, Brenda said, even though they'd like to get him weaned off some of those meds.
As she watches his current nurse encourage Blake one more time to traverse the kitchen floor, Brenda said, "He's such a special little boy. The doctor said if we can get him past two, he'll live to be 20."
And at the age of 4, Blake, with his wispy blond hair waving in the breeze created by his own exertion, seems ready, willing and able to defy the odds.
He's smiling. And when he's smiling he exudes an aura of sweetness that could melt the coldest of hearts.
Kruft could not be reached for comment. Brenda did notify the Minnesota Nursing Board in hopes Kruft's Licensed Practical Nursing certificate can he revoked.