tag:blogger.com,1999:blog-1043116364520938709.post8655416573275705232..comments2011-11-02T18:02:25.490-05:00Comments on thoughts... ramblings... points of interest....: Day 3 Mito In My EyesChantelhttp://www.blogger.com/profile/18107139150584407656noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-1043116364520938709.post-2808254583119557982011-09-21T15:15:58.462-05:002011-09-21T15:15:58.462-05:00Well said my friend...well said. You are already ...Well said my friend...well said. You are already making a difference!!!daycarneyhttps://www.blogger.com/profile/01022265915517998021noreply@blogger.comtag:blogger.com,1999:blog-1043116364520938709.post-72170090662549675952011-09-21T14:50:22.479-05:002011-09-21T14:50:22.479-05:00Welcome to the blogging world!!Welcome to the blogging world!!The M'shttps://www.blogger.com/profile/04178923523617756793noreply@blogger.comtag:blogger.com,1999:blog-1043116364520938709.post-10529420040476935242011-09-21T11:25:28.541-05:002011-09-21T11:25:28.541-05:00fantastically written! it was almost like ready m...fantastically written! it was almost like ready my life but about two sweet boys - one of which has a port and a GJ tube, requires a cooling vest (or a good bottle of water to soak his head with) and wears a CPAP. he's super smart and he takes naps in the mornings after only being up a couple of hours - but then he may bounce off the walls until he runs out of energy again. simply playing the WII all day landed him in the ER getting fluids....and he wasn't even really being all that active with it. it's so scary and frustrating. the people not knowing is the problem, you're so right!<br /><br />((hugs))Sissy Frissyshttps://www.blogger.com/profile/08997460901686690705noreply@blogger.comtag:blogger.com,1999:blog-1043116364520938709.post-18290977451179483942011-09-21T11:08:03.498-05:002011-09-21T11:08:03.498-05:00Great post. I have two kids with Shwachman-Diamond...Great post. I have two kids with Shwachman-Diamond Syndrome and secondary Mito. I blog a lot..... to raise awareness of two different rare diseases. Thanks for sharing.Anonymoushttps://www.blogger.com/profile/13420033815912286532noreply@blogger.com