Laylah
Laylah and Malachi were born on March 11, 2012, at 36.5 weeks of gestation. They were born healthy and have stayed healthy for the most part with the exception of the occasional cold etc. On September 10, 2012, I took them in for their 6-month check up which included the usual vaccinations. Malachi did well, but within a couple of days Laylah stopped eating.
On September 19th while at work I received an emergency phone call from my husband James. He was crying and all I kept hearing is Laylah and hospital and something about calling 911. I freaked out. Laylah was taken to the hospital by ambulance. At the hospital they ran tests saying something about a twisted stomach. After calling the pediatrician and long deliberations they finally decided to transfer Laylah to Oklahoma City 90 miles from home. There was nothing else they could do.
At Oklahoma University Children’s Hospital they ran every x-ray, ultrasound, and lab possible. They did not however do an MRI...they suspected infant botulism and ordered "BABYBIG" from the CDC in California. During the two days it to receive the "BABYBIG" they ran more tests and determined Laylah needed a unit of blood. The tests continued. She was seen by teams of neurologists, infectious diseases, neurosurgery and many more on a daily basis. A neurologist finally decided to run a MRI. A couple of hours later the neurologist returned to say they found a mass on her spine; we broke down. Further testing would eliminate cancer but then the neurologist came to say it was either Guillain-Barre Syndrome or Transverse Myelitis. TM was explained to us and we cried and cried.
One day during my time at Laylah’s bedside I was watching my precious baby girl when suddenly she moved her left arm. I grabbed my phone to video her movements. She was smiling every time she managed to raise that tiny arm of hers. I showed the video to Dr. Purcarin, her neurologist and she clapped hands of joy. Laylah was then transferred to PMRU Children's Rehabilitation Center.
My baby girl has been at the children’s center since October of 2012 and it was the worst time of my life, having to leave my baby behind! In short, TM affected Laylah from c3 to t6 and left her paralyzed from her chin down. She is now able to move her legs, her shoulders and seems to have some sensation in her arms. She is very spastic in her elbows and still hypotonic in her hands and fingers. She now relies on a machine to breathe for her and a machine to feed her. I hate this monster called TM. Because of government immunizations, my daughter has lain in a hospital bed for the past 20 months! She is unable to reach for and hold her much beloved animals. She has lost her childhood.
Laylah and Malachi were born on March 11, 2012, at 36.5 weeks of gestation. They were born healthy and have stayed healthy for the most part with the exception of the occasional cold etc. On September 10, 2012, I took them in for their 6-month check up which included the usual vaccinations. Malachi did well, but within a couple of days Laylah stopped eating.
On September 19th while at work I received an emergency phone call from my husband James. He was crying and all I kept hearing is Laylah and hospital and something about calling 911. I freaked out. Laylah was taken to the hospital by ambulance. At the hospital they ran tests saying something about a twisted stomach. After calling the pediatrician and long deliberations they finally decided to transfer Laylah to Oklahoma City 90 miles from home. There was nothing else they could do.
At Oklahoma University Children’s Hospital they ran every x-ray, ultrasound, and lab possible. They did not however do an MRI...they suspected infant botulism and ordered "BABYBIG" from the CDC in California. During the two days it to receive the "BABYBIG" they ran more tests and determined Laylah needed a unit of blood. The tests continued. She was seen by teams of neurologists, infectious diseases, neurosurgery and many more on a daily basis. A neurologist finally decided to run a MRI. A couple of hours later the neurologist returned to say they found a mass on her spine; we broke down. Further testing would eliminate cancer but then the neurologist came to say it was either Guillain-Barre Syndrome or Transverse Myelitis. TM was explained to us and we cried and cried.
One day during my time at Laylah’s bedside I was watching my precious baby girl when suddenly she moved her left arm. I grabbed my phone to video her movements. She was smiling every time she managed to raise that tiny arm of hers. I showed the video to Dr. Purcarin, her neurologist and she clapped hands of joy. Laylah was then transferred to PMRU Children's Rehabilitation Center.
My baby girl has been at the children’s center since October of 2012 and it was the worst time of my life, having to leave my baby behind! In short, TM affected Laylah from c3 to t6 and left her paralyzed from her chin down. She is now able to move her legs, her shoulders and seems to have some sensation in her arms. She is very spastic in her elbows and still hypotonic in her hands and fingers. She now relies on a machine to breathe for her and a machine to feed her. I hate this monster called TM. Because of government immunizations, my daughter has lain in a hospital bed for the past 20 months! She is unable to reach for and hold her much beloved animals. She has lost her childhood.