Last night Morgan was complaining of headaches and grabbing her head and we chalked it up to a long day of playing after OT & PT. Then again this morning she woke up with a headache and wouldn't get off the couch for most of the morning. I asked her if she wanted to go to her dance recital or skip it (an adaptive dance team she has been doing since Sept 2017) and she was so excited to participate she jumped off the couch to change into her adorable yellow tutu custom.
In the car on the way to the recital she fell asleep and I had to carry her in to meet her dance team backstage (unusual). She woke up a bit and I forewarned the instructor of her condition, gave her my cell no in case of emergency then joined the other parents and my husband and son in the stands to watch. It seemed like she danced in her dance recital as well as she typically would and we eagerly awaited her finish at the finale a few songs later.
I could tell immediately something was off when Katy, her dance helper, carried her out on stage for the finale sleeping in her arms. She was slumped over her body and would barely lift her head to acknowledge the thousands of people staring at her on stage. I scurried down to pick her up after the finale and her teacher and helper explained to me that they could barely keep her awake backstage the last couple of hours. I lifted her limp/lifeless body onto mine and walked out to the front to meet family & friends. We could not wake her during this time and after several minutes decided best to take her in.
We checked her in to ER at Children's in St Paul and during this time she was still mostly unconscious. About 30 mins later after she was settled into the hospital room (nurse took vitals, etc and scheduled scans) she perked up like nothing happened. We proceeded with the MRI and Xrays, took blood work and everything looked normal. Nurse and ER doctor agreed her behavior was unusual but after discussing with neurosurgery they agreed to discharge her as long as we set follow up appointment with neurosurgery. Hooray for no overnight hospital stay but UGH for her odd behavior lately!
My Journey with hydrocephalus and Cerebral Palsy
Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
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