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Post by beyerstwins on Mar 21, 2009 21:51:23 GMT
Hi Everyone. I am new to this chat group and actually I have never really done a chat group before!!! I have twins that are 20 months old, William and Ella. William was found to have lissencephaly, microcephaly, agenesis of the corpus callosum, hydrocephalus ex- vacuo and cerebellar hypoplasia. It has been difficult at times having to care for twins and all of William's special needs. He had been hospitalized three times for respiratory problems and has some feeding concerns. His seizures started at 3 months old and are under partial control with medication.
He is a beautiful boy. He is limited on his motor skills but can reach for hanging toys and play with them. He does not sit or roll yet. He has a cortical visual impairment as well that limits his grasping and reaching abilities.
I would love to connect with other people! I have not yet met anyone that has twins, one of whom has lissencephaly.
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Post by Shannon on Aug 16, 2013 10:33:37 GMT
Hi there, My usband and I have just returned from the hospital with the news that our one twin has lissencephaly. I am completely in shock. Trying desperately to gather information. It is encouraging to hear success stories though. Our son & daughter twins are 4 1/2 years old. Van (our son) has just been diagnosed, where he has had some delays and a few signs, tight body, looking to one side and does not interject socially like his twin. I was not expecting this a result and no absolutely nothing about this condition. The more I read the more terrified I get. There are so many questions! How is your other twin? Why only one twin effected?
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Post by smoothcriminal on Oct 28, 2016 7:08:47 GMT
Hi Everyone. I am new to this chat group and actually I have never really done a chat group before!!! I have twins that are 20 months old, William and Ella. William was found to have lissencephaly, microcephaly, agenesis of the corpus callosum, hydrocephalus ex- vacuo and cerebellar hypoplasia. It has been difficult at times having to care for twins and all of William's special needs. He had been hospitalized three times for respiratory problems and has some feeding concerns. His seizures started at 3 months old and are under partial control with medication. He is a beautiful boy. He is limited on his motor skills but can reach for hanging toys and play with them. He does not sit or roll yet. He has a cortical visual impairment as well that limits his grasping and reaching abilities. I would love to connect with other people! I have not yet met anyone that has twins, one of whom has lissencephaly.
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