Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Hi Everyone, I haven't posted in quite some time. Mattie is now 4 1/2. He has pmg and bpnh. He has no known seizures. He is able to walk, understand everything just about and say a few words (most notably mama which I just heard for the 1st time!!!) computer, bye bye,hi etc. He has a lot of oral motor issues which we think is affecting this. He is an oral eater but does not have a " rotary " chew. He has a lot of sensory issues (cries everytime music ends), gags at certain toys and foods etc. He loves his baby sister Audrey 2 1/2. We live in New Jersey where it is snowing right now. Ughhh. Mattie is having surgery on December 10th at Childrens Hospital of NY (Columbia). He has a large hole in his skull 1 in by 3 in possibly it was his softspot (fontanelle) that never closed or just a defect. According to Neuro unrelated to his neuronal migration disorder. Anyway... he is having surgery to correct... they cut out a piece of his skull from another area and correct the hole with that. He will be in the hospital a few days. Our neurosurgeon has assured us that this is a 1 out of 10 as far as degree of difficulty but of course as parents we are still concerned. He will be a baldy for awhile so we plan on getting his lots of fun hats during recovery. I feel badly that I don't keep in touch as much anymore... I think of all of you often but I find that I have a hard time reading the posts lately... it makes me so sad to know so many people struggling with their precious children. That's it, any extra prayers out there would be appreciated. Thank you, Sally (mom to Mattie who says Mama and Dada now... life's BIG pleasures!) Quote Link to comment Share on other sites More sharing options...
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