We had a follow up appointment scheduled with Morgan's neurosurgeon today. I didn't really know what to expect from this appointment because she didn't have scans or MRI planned - just an appointment with the surgeon and his staff.
I think this was the first doctor appointment ever that Morgan did not cry at :). She has been in a particularly spirited mood lately and thankfully no episodes like we saw last fall for several months! We spoke about her Gillette Children's rehabilitation appointment and if she would be a candidate for Botox injections - which can help treat spasticity (muscle stiffness) to help with gross motor. After examination of her legs, feet, hands and arms, she does have some tightness on her right side but not enough to warrant Botox he thought. He said just continue to work with her, encourage her to use her walker and be on her feet as much as possible. Again reassurance she will walk some day soon. We also talked about how sometimes she seems to take a while to recover from normal toddler stumbles...there have been occasions when she falls over she gets sleepy and wants to lay down for a half hour or longer until she seems to feel better. Apparently it is very difficult and rare to cause a shunt malfunction from impact - if anything it might just cause a bruise from impact. Hydrocephalus kids are more susceptible to concussion related behavior and he just said to monitor it and as long as it doesn't extend to several hours then no reason to be concerned. Other than that, just conversation around her progress and therapies and he thought she was doing great! So hoping no reason to go in for scans until this fall again.
This was the second time we have seen this new surgeon and we were hesitant to make a switch given her complicated surgical past. I feel like I have been waiting for some sort of direction but I left her appointment feeling confident that we made the right decision. Was very refreshing to have a team of nurses and the surgeon sit with us, carefully watch and examine Morgan and feel like they legitimately cared for not only the status of her shunts but her general well being and progress. Its difficult with Hydrocephalus to research and find a surgeon and medical team that "fits" when often the need is an emergency situation but I think it was important for us (and most importantly Morgan) and would be my recommendation to other patients and parents. This is a condition that they will live with forever so find a doctor/surgeon that you are comfortable and can communicate with!
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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