Today I made an appointment for Morgan's follow up neurosurgeon appointment for next month and I was thinking its been a really long time since I have posted about her progress- which is probably a good thing because it means she hasn't had any major issues!
Its been one year and two months since her last shunt revision and we are so thankful for this and what seems to be stability (for now). Not to mention her hair is actually getting long! She is so happy lately, singing and playing with her brother and loved our recent vacation to Florida, enjoyed her winter swimming lessons, etc! In hind sight this probably just means that she was likely having headaches or something was bothering her before. In December we were at a very frustrating point and thinking about taking a break from her Physical and Occupational therapy- it was getting so difficult to watch her fearful & crying through these sessions and they didn't seem to be helping. Three months later and her sessions are completely opposite- she is smiling and playing with the therapists, walking with a walker, and finally gaining some trust in them!
We met with Gillette Children's Pediatric Rehabilitation Medicine Specialist last month (at the recommendation of her neurologist and neurosurgeon) - they took x-rays of her hips to ensure they are developing properly (concerns they were not due to her butt scooting) and they look fine. They did make her a new/taller ankle foot orthotic for her right foot because she tends to walk on her toes on that side. We have heard the term cerebral palsy thrown around many times since she was born but I think it was the first time they have officially diagnosed her with CP. I will never forget the first time they told me my daughter will almost certainly have CP - she was 6 days old in the NICU - and it immediately crushes you and your hopes that your child might live a "normal" life. Its hard to accept an official diagnosis but the reality is that other than the fact that she can't walk at 2 1/2 years old, it is very mild and mostly unnoticeable. I can't tell she has low muscle tone on her right side even when the doctor's show me. The therapist did look at us and said she is very confident she will be able to walk and run some day soon,
She is still doing great with fine motor, cognitive and language skills (Spanish & English), will just continue working hard with her and encouraging the crawling, standing and walking.
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.
