week 2 of crazy appointment schedule!
Wednesday we had a vision exam follow up appointment and met with the vision therapist. Admittedly been terrible about having her wear her new eye glasses daily (not an easy feat with a 5 year old to keep them on her!). They adjusted her fit (3rd times a charm?) and tried on several more pairs of glasses but ultimately kept the 2 we purchased with some adjustments & a plastic piece to fit behind her ear. Vision therapist did some assessment and was able to get decent testing (was worried about her comprehension at this age still) and this is something we will consider to start vision therapy in the fall. There is quite a discrepancy on doctor's opinions for vision therapy and little research that shows medical benefit but I have spoken with many contacts who believe it helps their children immensely. We are trying to address her visual processing and delays with writing, coloring etc.
Thursday she had a rehabilitation dr appointment for botox injections in her right leg again. We decided to try this at Children's MN this time instead of Gillette's and while our experience and communication with this Dr was MUCH better I was extremely disappointed when he told me right before we left that he was leaving Children's :(...back at square one. The challenge has always been after the injections and the lack of follow up to know if this is beneficial and the correct dosage, etc. - need to decide if we will now stay at Children's with their NP or go back to Gillette's rehabilitation dr. The appointment itself went fine - they do this in the short stay unit so that they can give her nitrous (which is actually semi-entertaining) and the injections are painless. Morgan HATES fruit and anything fruit flavored so also a bit entertaining to having the nurse shove a bowl of fruit flavor smuckers lip stuff in her face for her to chose which flavor she wants on the nitrous mask- wish they would put this in her chart! I am not sure if I have mentioned this in a prior post but her OT once mentioned her aversion to fruit (which happened suddenly after a shunt revision) could very likely be related to this fruit flavor on the nitrous mask...interesting!
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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