Guest guest Posted October 24, 2011 Report Share Posted October 24, 2011 Welcome to the group! My daughter is 5 yr with unilateral PMG on the right. Results in left hemi CP and seizures. She is currently doing very well in preschool(handwriting is the current challenge) just done with the first soccer season. I now have learnt that she thrives in structure. Remember this is an everchanging challenging journey. Diane New to the Group, Hi! Our son, Calvin, is two and has bilateral PMG. Our family (four kids) were living overseas when Calvin was born; after a few months of struggling to care for him we moved back to Michigan in the US. Calvin is cortical vision impairment, low tone, high spasticity, and tracheobronchomalacia. I think the hardest part about caring for him is the soft airway. He sometimes chokes on his own saliva and when he cries his airway collapses and he becomes blue and then hypoxic if we don't intervene. It has been two years of tremendous grief and transition which I'm sure many of you know about. Up until this point I haven't connected with other parents of PMG, I thought I was the only one out there with this disorder, especially since there is no known cause. We love our boy dearly but it is very difficult to see him suffer and he spirals down quickly with any respiratory issues. He loves his brother and two sisters, swinging, music, cuddles, and the sound of running water. I blog regularly at www.karadedert.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2011 Report Share Posted October 24, 2011 Hi Kara, I just read your post about Calvin. My granddaughter, Brie, 3 months old with bilateral PMG also has laryngomalacia. Though she does not have the severity that it sounds like Calvin has, it's such an awful thing. She also struggles with choking on her own saliva and we worry about it a lot. Also her breathing sounds awful and people often think we are letting her choke to death. It's just an added level of worry on top of the PMG. I will try to check on your blog later today. I'm headed over to pick up brie now. I also have a blog but I just started it. It's at brielovebug.blogspot.com. Welcome to our group! Catrina- Brie's Gram > > Our son, Calvin, is two and has bilateral PMG. Our family (four kids) were living overseas when Calvin was born; after a few months of struggling to care for him we moved back to Michigan in the US. > > Calvin is cortical vision impairment, low tone, high spasticity, and tracheobronchomalacia. I think the hardest part about caring for him is the soft airway. He sometimes chokes on his own saliva and when he cries his airway collapses and he becomes blue and then hypoxic if we don't intervene. > > It has been two years of tremendous grief and transition which I'm sure many of you know about. Up until this point I haven't connected with other parents of PMG, I thought I was the only one out there with this disorder, especially since there is no known cause. > > We love our boy dearly but it is very difficult to see him suffer and he spirals down quickly with any respiratory issues. He loves his brother and two sisters, swinging, music, cuddles, and the sound of running water. > > I blog regularly at www.karadedert.com > > I'm looking forward to being involved in this group. > > Take Care, > Kara > Quote Link to comment Share on other sites More sharing options...
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