tag:blogger.com,1999:blog-4288913753095992578.post4051261970435749254..comments2023-04-19T20:21:20.272-04:00Comments on Our Little Cupcake: Why I'm OK with MCADD - ammendedCupcake's Mamahttp://www.blogger.com/profile/15451180139723462937noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-4288913753095992578.post-44948736301059959482011-05-02T17:46:56.186-04:002011-05-02T17:46:56.186-04:00Thank you all for your encouraging words. I am st...Thank you all for your encouraging words. I am still on this journey, and trying to put it into words is really helping me frame how I feel about it.Cupcake's Mamahttps://www.blogger.com/profile/15451180139723462937noreply@blogger.comtag:blogger.com,1999:blog-4288913753095992578.post-81634950729937227302011-05-01T18:54:56.987-04:002011-05-01T18:54:56.987-04:00It is a strange ride, a lot of ups and downs. I am...It is a strange ride, a lot of ups and downs. I am with you 100%. I have come terms with the challenges that we face. I have decided that we are lucky, he could have been diagnosed with something far worse. This disorder isn't going to define him or me. People say to me, "well he looks healthy." I have to just say he is healthy. Until he isn't and that is when we start to worry.Keep On, Keepin On- MCADD chronicles, plus some other stuffhttps://www.blogger.com/profile/03310509081387836191noreply@blogger.comtag:blogger.com,1999:blog-4288913753095992578.post-15598477381993195362011-05-01T16:05:36.647-04:002011-05-01T16:05:36.647-04:00I can relate. Jack wasn't picked up on newbor...I can relate. Jack wasn't picked up on newborn screens but he was given first rate medical care during his first crisis, so no lasting damage and- Jack's crisis enabled his younger brother's disorder to be caught before he was weaned and vulnerable to a crisis.<br /><br />I've learned so much on this journey.Rieshyhttps://www.blogger.com/profile/01480054293869865269noreply@blogger.comtag:blogger.com,1999:blog-4288913753095992578.post-54223447922404253452011-04-29T01:23:51.430-04:002011-04-29T01:23:51.430-04:00I need to catch up on your blog. I'm currently...I need to catch up on your blog. I'm currently shorthanded around here lol. <br /><br />However, I understand completely what you are saying. Klaw was 6mo old before his 1st hospitalization and I quickly realized just how lucky we are. For mist VLCADD kids (prior to NBS), this would have been the illness that ultimately resulted in metabolic crisis, then death. Having the diagnosis is the biggest step towards keeping our FOD babies healthy and alive.Dana Khttps://www.blogger.com/profile/04126193301311318519noreply@blogger.com