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However, she explained it was impossible to place a shunt in Luna, even with the very mild hydrocephalus she presented at the time.

Palliative care told Robyn and Glenn to prepare for the chance that Luna could pass away within hours or days. The couple was completely blindsided by how drastically things changed since they brought Luna to the Emergency Room.

On top of a devastating diagnosis and prognosis, there was an error with insurance and the family was discharged from the hospital without hospice care.

They were told they would never be alone and now they were faced with caring for Luna on their own. Doctors had said Luna would never develop further or reach future milestones.

However, Luna socially smiled for the first time the night they came home from the hospital. Her light began to shine in the darkness.

Luna continued to defy the odds of her diagnosis. Despite her prognosis, Luna continued to live and the quest to find a surgeon to place a shunt began.

Robyn tried to explain that the brain scans do not match how Luna was functioning as she continued to meet milestones.

Robyn and Glenn decided to move back to Las Vegas to have more support in their search for a surgeon and to be able to qualify for hospice care for Luna.

Robyn, determined to find someone to help their daughter, wrote dozens of letters to pediatric neurosurgeons around the world.

None of her letters or messages were returned. About a month after the move, Luna had her first major health decline. She was having trouble eating and was severely dehydrated.

Robyn and Glenn took her to the Emergency Room. Her head was very big compared to her body now and she was losing her hair.

She was very skinny, like a skeleton. It was a shock to see a child like that because you rarely see a child with hydrocephalus who is unshunted in America.

Luna was admitted to the hospital for fluids. He was determined to help the family find hospice care upon discharge. When they returned home, hospice care was in place for Luna.

They believed it was only a matter of days until Luna would pass away. In September of , Luna stopped eating and the family was sure it was the beginning of the end.

The hospice team placed an NG nasogastric tube in Luna for comfort care medication. After 48 hours of having the NG tube in place, Luna perked up, wanted to nurse and she slowly gained weight.

In October, Luna began to have cyanotic seizures, during which she would stop breathing and turn blue. She began to regress and lose milestones like rolling over, putting her hands in her mouth, playing and cooing.

It was getting harder and harder for Luna to live. She lost her ability to nurse and was being fed completely through her NG tube.

During this stressful time, Robyn continued to navigate insurance challenges, seek other opinions, wrote to news stations and openly shared their story on social media.

The family finally reached a turning point when they received a new hospice nurse who became pivotal in their journey. How could I not keep fighting so hard to find the person to save her?

She compiled a list of doctors from her followers on Instagram and began to research doctors in Southern California.

Their hospice nurse expedited the process by cutting red tape and opening doors that only someone in the medical world could. Within days, Robyn narrowed the search down to a few doctors to actively research and pursue.

When Robyn saw his picture on the hospital website, she finally felt a sense of hope. Muhonen receiving the scans.

During the call, the surgeon confirmed that Luna did not need a new pioneered technique, that all she needed was a shunt and he was willing and able to operate.

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