Never ending appointments and our crazy life with a special needs child!
Today we had follow up with Rehab Medicine at Gillette's. It is about 1 1/2 months post botox injections in her right leg and not really seeing results. We hoped it would loosen up her right ankle and help reduce tone to help with the toe walking. Overall they are pleased with her progress, therapies, orthotics, etc but looking for something better to get her leg & ankle stretched out and standing/walking flat footed.
One option we discussed is called serial casting, here is some information on this process: https://www.gillettechildrens.org/your-visit/patient-education/serial-casting-following-a-botulinum-toxin-injection-procedure. This is something we are definitely interested in doing but since it is summer we will likely try to schedule in the fall after school starts (can't swim and baths will be a challenge)- will try two cast application two weeks apart and could do a third if needed.
Second thing we are going to look at scheduling is called gait and motion analysis- this requires a team of specialists (Rehab doctor, neurosurgeon, orthopedic doctor) and it takes a while to get an appointment so will be getting this on the books for an off school day in the future. Here is more information: https://www.gillettechildrens.org/conditions-care/gait-and-motion-analysis
We are going to move forward with the first two options (non invasive) but something that was also brought to the table was rhizotomy surgery. This is surgery on the nerve rootlets in the spinal cord to correct spasticity. Quite honestly this makes me very nervous to think about doing surgery on her spinal cord but will see how things go with serial casting and leave the option open. Here is more information on this procedure: https://www.gillettechildrens.org/conditions-care/selective-dorsal-rhizotomy-sdr-surgery/what-is-rhizotomy-or-sdr-surgery
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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