Stacey's Addition: Pablo boy to get home remodel for improved care
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When Stacey Stalheim was born, doctors told his mother he only had six months to live. In June, he celebrated his seventh birthday.
Stacey has defied the odds since birth and seems to be in good health despite his medical condition.
Mother Nicole Miller recalls warning signs that something was not right with her precious newborn.
“I never heard my son cry,” she said. “What child doesn’t cry when they’re born?”
On his second day home, Stacey turned “cobalt” blue and was rushed to the hospital.
“I didn’t panic: I did a revive and the nurse told me it was acid reflux,” Nicole said. “But then he turned blue in the waiting room, and people scattered around.”
After sending Stacey’s blood work to multiple hospitals throughout the Northwest, all results came back negative, giving no clues as to what disease Stacey had.
“He has an unknown disease,” Nicole said. “He hasn’t been positive to anything. We call it ‘Staceyitis.’ I went to Helena, where they told me to enjoy his first birthday because it would probably be his last.”
After discovering the severity of her son’s condition, Nicole said she was frustrated with the situation, as she had been extremely cautious during pregnancy to ensure her son’s health.
“I didn’t even take a Tylenol,” Nicole said. “I didn’t understand why this had happened.”
Over time, Nicole took her situation in stride, holding strong to the belief that Stacey was given to her for a reason.
“He was given to me because God wanted someone who could care for him,” Nicole said.
Stacey has CBI disease, which is where the cord that connects his brain to his eyes is not fully connected, meaning he is semi-blind. This allows him to only be able to see at certain times. He also has paralyzed vocal chords, preventing him from speaking, and struggles with hearing loss in both ears. He also had tubes put in for drainage control, and separate tubes that provide him his food.
Stacey has infantile scoliosis and has pulled his hips out of their sockets, making it hard for the boy to get comfortable.
“That’s why a physical therapy table would be great,” Nicole said.
“His eyes are hollow,” she explained. “Sometimes they are flipped back in his head, and that’s when you know the connection is gone.”
With no immune system, Stacey is highly susceptible to illness, requiring him to be quarantined in his Pablo home to keep him safe.
“Luckily he has not been to the hospital in three years,” Nicole said. “He has been very stable.”
With that stability, Stacey is growing more rapidly and becoming more of an issue for mobility in his cramped home, since he requires more equipment now.
“It’s definitely getting more difficult to move him around,” Nicole said. “We need more space for his range of motion. We can’t fit the physical therapy table in his room. We need more space.”
With Nicole noticing the need to expand, she decided to build an addition for her son. The family plans to take the bedroom wall in Stacey’s room out to enlarge it, while also adding his own entryway from the outside. The family of six shares one small bathroom, so they will give Stacey his own walk-in shower.
Stacey currently has the largest bedroom of the home he shares with three other siblings and two parents. Along with the large family, a nurse stays with Stacey around the clock to monitor his status, making home even more cramped.
“It would be a tremendous help for us,” RN Jack Dunn, who cares for Stacey, said. “It’s cramped quarters, which makes it awkward.”
At Nicole’s home, a simple task such as vacuuming the living room has blown the main breaker so many times that Mission Valley Power cut the lock on the breaker box so the family didn’t have to pay the fee for staff to come out after every occurrence. The new addition will include a new breaker box just for Stacey’s machines.
“It will be nice for the nurses to have their own facility, and they can have room for physical therapy,” Nicole said.
Also in the plans for the addition is a new ramp to replace the steep, unsafe boards that are currently being used to get him into the home.
The original estimate for the addition was $15,000, but Woody’s Western Building Center discounted items to cut costs to make the project total between $8,000 and $9,000. Ace Hardware also will be helping Nicole with needed items. Nicole works 40 hours a week at Super 1 Foods in Polson and says it’s been a struggle to come up with the remaining money it will take to pay for the addition. She currently has $4,000 saved up to pay for the addition.
Nicole has been living in a rented home for a few years, and is gracious for her landlord allowing for the addition to be built. Nicole said that if he had denied her request, her family would have to either continue struggling in a cramped environment or move.
“He’s been great,” she said. “He tries hard to make it accessible.”
The construction of the addition will take three weeks, after construction materials arrived this past Monday.
If interested in donating to Stacey’s addition construction costs, you can contact Nicole at (406) 675-0706.
