One day at a time

Loading up the car for a trip to the grocery store or a short ride to visit family in Warden is no small task for mother Shelly Rodriguez and her three children.

All four have Brittle Bone Disease, also commonly known as Osteogenesis Imperfecta (OI).

The disease is a result of an insufficient or defective supply of collagen, a fibrous protein, causing the formation of brittle bones that break easily. In people with OI, fractures can either occur occasionally with little or no deformity, or result in skeletal deformities and in some instances, death. There is no known cure for the disease.

Before leaving home, the first thing Shelly has to do is load a wheelchair or walker for her oldest son, Victor.

There have been times when the three children, all in body casts, had to be placed one by one into the family car.

It was those times when Shelly and her children would resign to staying at home rather than going anywhere out of concern for possibly breaking more bones.

If Shelly places too much strain on her own fragile body, she places herself in danger of breaking a bone like she did in October of 2004 after folding up a wheelchair she was trying to put in the family car for her son Victor to use.

That accident resulted in a fractured hip.

In May, Shelly had surgery to place pins in her hips to stabilize the fracture.

Limping from the living room to the kitchen, Shelly's energy level will be depleted in 10 minutes and her body will fill with excruciating pain just from walking without her pain medication.

Once a week she takes a medication called Fosamax, usually prescribed for those with osteoporosis, to help alleviate joint and muscle tension.

Her two younger children, Andy, 11, and Karissa, 6, also take Fosamax and a combination of multivitamins.

Victor used to take Fosamax and is now treated intravenously at Shriners Hospital in Spokane every four months for three days at a time to help build his supply of calcium. It is a commitment that requires the 12-year-old boy to stay overnight at the hospital.

Aside from the medications, Shelly's children avoid drinking pop and other sweets that don't provide enough calcium to build up their bones.

No matter how overprotective Shelly and her husband Andy have tried to be, no amount of prevention can guarantee fractures won't occur.

Constantly reminding her children to be careful, and advising other children to be careful around them, and being attentive to every move or sound that would come from their playroom consumed Shelly until her children got older.

Now, concern still fills Shelly's mind every time her children go outside to play, but she knows she has to let them live as much of a normal life as possible.

To Shelly, "normal" means not letting the disease rule over her family's life.

Living up to that has meant letting Victor play baseball and considering the possibility of allowing her other two children to join the local recreation club.

Victor's latest request is to take a self defense class. Shelly and her husband are still considering that desire as they contemplate the risks involved.

Despite efforts to create a sense of normalcy, the disease has made life problematic at times.

Shelly often had to carry her children on pillows as babies until they were 8 or 9 months old, being careful not to let others hold them for fear of an arm or leg breaking.

One time when her second oldest son Andy was being picked up out of his car seat, Shelly went to lift him up and broke his arm.

Other fractures have occurred while simply holding her children, or from tripping and falling down.

Baby-sitters often charged higher rates to watch Shelly's children or would not agree to watch them at all due to the fragility of their illness.

Return trips to the hospital and doctors' offices with children who had broken bones worried Shelly and her husband about accusations of child abuse.

The first time Victor suffered a fracture, his father felt like the doctors were accusing him; it was the look in their faces that made him think they were suspicious that the children had been abused, Shelly said.

Other trying moments brought on by the disease have included those when all three children were in spica casts.

The full-body casts extend from the waist down and are typically worn for six to eight weeks after a bone is broken to help heal a fracture.

Every move the children make has the potential to cause another broken bone; another six to eight weeks in a cast.

All three children have undergone surgeries to strengthen their brittle bones. Metal rods in Andy and Karissa's legs and screws in Victor's ankles help the children to walk upright and provide additional support in the event of another fracture. Each child was under the age of 6 when they underwent the surgical procedures.

There were nights Shelly cried for her children who were not only recovering from the painful surgeries, but were also in spica casts during the healing process that required helping them eat and go to the bathroom.

It took about two weeks after each surgery before they were comfortable and could move around on their own, Shelly said.

With each bone fracture, comes more physical therapy; more surgery and more medical bills.

Shelly's husband Andy works 16- to 18-hour days as a field laborer on local farms. In 1998, he took three years off of work to stay home and raise their children. It made more sense for him to stop working as his job is seasonal and didn't offer health insurance, Shelly said. For the last 11 years, Shelly has worked for the Washington State Migrant Council in Moses Lake, often having to take medical leave if she or one of her children fractures a bone.

"We can't afford to not work," Shelly said.

But the Rodriguez family does not allow the disease and its effects to dominate their lives. There have been courageous moments too.

One of those times was in 1996 while on a trip to the doctor when then 4-year-old Victor began walking in his spica cast.

The doctor thought that was pretty incredible as he had never seen anybody walk in one before, Shelly recalls.

To cope with the realities of OI, Shelly and her family turn to each other and to their faith in God.

Through frequent visits by her mother who lives a block away and in continuous prayer, sometimes sitting by her children's bedside saying the rosary, Shelly finds renewed strength.

At one time her husband Andy attended what is called a curillo, a two- or three-day retreat offered through the Catholic Church for men to come together and worship.

It was something Shelly says helped her husband come to terms with OI and be at peace with the restrictions it has placed on his family and their desire to have a large family.

What keeps their oldest son Victor optimistic is knowing that things could be worse and "knowing how bad other people have it," he said.

For 11-year-old Andy, it is keeping a sense of humor in all situations that helps him bring a smile to his family's faces when the disease seems overbearing.

"He's the one with the big heart," Shelly said of her son Andy.

Playing with Barbies and maintaining the carefree attitude of a 6-year-old, Karissa tries not to let the disease rule over her either.

The fragility of her own body is not something she seems to be too conscious of; it doesn't keep her from being a child and having fun, Shelly said.

"When you believe in God and you feel him, there's nothing you can't handle," Shelly said. "If He chose us to have them, we're perfect for them," she said of her children.