Brought Morgan in for MRI and suture removal today. Grandma came with us so that she could be with Morgan during the MRI since I cannot (21 weeks pregnant). Apparently the MRI machine is quite loud and Morgan cried the whole time which is sad to hear- she was not sedated. There was some confusion on where Neurosurgery would meet us and we ended up going to the short stay unit at Childrens so they could remove her sutures and reprogram her shunts (this has to be done after each MRI since magnetic).
Was quite a nightmare- us pinning Morgan down to try to get the stitches out of the back of her head and then he had to put a couple more in since it was not fully healed :(
Also not easy for him to reprogram her shunts since she would not sit still and was crying and moving her head. Long morning and took much longer than we expected- glad it is over!
We were planning a family vacation to Florida to leave this weekend and have been debating for a couple of weeks if we should still go. Since the tickets were already purchased I waited until today to see how her MRI looked, etc. before deciding if we should go. They are OK with her traveling and everything looks fine but I think just scarier this time since it is right after 2 back to back issues. Once again, researched neurosurgeons in the Miami, FL area and had a plan if something should happen and asked them to put this MRI on a disc so we can take with us.
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.
