About our daughter
Our daughter who we refer to as “Maya” was born in 2007. She was delivered at 33 weeks for non-reasurring fetal signs after I had developed pre-eclampsia (high blood pressure related to pregnancy) during the last trimester of my pregnancy. After her second of six weeks in the NICU, she developed a grade 3-4 intraventricular hemorrhage, or bleed, in her brain. This eventually resulted in her official diagnosis of cerebral palsy at 1 year of age, and later, a diagnosis of epilepsy.
Maya is primarily affected physically by her CP, and specifically in her trunk and limbs but she does have some processing delays and problems with her vision. I will speak further about this in other sections of the site. Her official diagnosis was mixed spastic diplegia with some dystonic posturing. However, there has been some disagreement about whether she has spastic diplegia or quadriplegia. Throughout my research for the site I have learned that there is often confusion and disagreement about specific diagnoses within CP. As her parent I can tell you that I only concern myself with it to the degree that it will help me direct her care and treatment. From our perspective Maya’s brain injury impacts her use of all four of her limbs to the degree that she does not have near typical use of any of them, and she has some issues with balance. Her head and neck control are quite good but her trunk control is variable. Currently, Maya is able to crawl and is learning to use her manual wheelchair with greater ease. She still relies on other people to help her physically navigate most of her world. We continue to see improvements, and hope for, and will work towards helping her reach her greatest possible potential, whatever it may be.
Update Jan 2016–Maya is increasingly using her walker and her stamina for movement has greatly increased over the last few years. Just this week she went into a building for the first time without her wheelchair!
Since she was born, we have been looking for a site like this, where a parent of a child with mild to moderate CP can find useful, easy to access information about the daily details of raising his/her child. Since we never found what we wanted, I decided to put this site together.
A few notes about the site
Most of the blog content will be written using mom’s voice but there are certain sections where dad will participate directly in the writing as well. For the sake of simplicity I will use “she” rather than “he/she” wherever warranted since our frame of reference is our daughter.