tag:blogger.com,1999:blog-3685455393791710375.post5199562598462120082..comments2023-03-25T19:22:20.292+09:00Comments on All the Marletts, Our Life as a Family: I have a lot on my mind…All the Marlettshttp://www.blogger.com/profile/04779861921449882694noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-3685455393791710375.post-17262650668695681762010-04-14T00:05:37.211+09:002010-04-14T00:05:37.211+09:00Having read all that puts a lot on MY mind. I am w...Having read all that puts a lot on MY mind. I am waiting for the mtDNA results for our youngest, and your post has me putting myself back to reality that my hope for a result through that is not really likely.<br /><br />Our insurance company assigned us a care manager (that's what they call them) and that has been an immensely important help for us. We don't have a diagnosis, but have all sorts of specialists and tests and procedures every year, so it gets to be too overwhelming for one mom with medically complicated children to cope with. I definitely think if your insurance isn't providing it, to get that set up. It will be worth it.<br /><br />I started a new blog to explore our world of "suspected mito" because we haven't been able to get a diagnosis and the uncertainty of everything we've been through and are going through gets the best of me at times. I was thinking of posting links to families who also are facing testing, or who have and finally have a result. I'd call it something like "Mito Mates" or something like that. Would you mind if I list your blog there? I know I don't really have to ask permission with a public blog, but I just thought out of courtesy I'd check.<br /><br />I've read about the symposium now on your blog and another, and saw it on UMDF's website. Would that be helfpul for a family who has a possibility of mito, but still hasn't been diagnosed? We currently don't have severe complications, but w/ two kids who died who "looked fine" overall, we never know if we'll have another crisis event suddenly or if things will continue to be mostly okay, with a few mild medical complications.<br /><br />Anyway, thanks for sharing your insights. I'm definitely gaining a greater appreciation for families who are living with mito disease, even if it ends up that is not what is causing all our family's problems. You guys are amazing!plaidspoliticshttps://www.blogger.com/profile/00393586634918991649noreply@blogger.comtag:blogger.com,1999:blog-3685455393791710375.post-76112780828075270872010-04-13T18:29:51.967+09:002010-04-13T18:29:51.967+09:00(((hugs))) Just sounded like you needed one! Sorry...(((hugs))) Just sounded like you needed one! Sorry to hear about the insurance woes, a case manager can certainly make things easier once its in place.<br /><br />The constipation thing is something I can relate to. This has been Jacks issues from early on, but I must admit he's never gone a month! Poor girl. The Miralax is the only thing that works for him. He's doing OK now, at 1-2 caps a day. It use to be more than that. But if you want a kid to get out of diapers, thats tricky when its all liquid! So its a balance act getting it just right so he can make it there without an accident. And thats not easy when you have weak muscles. I just wanted to let you know, Jack wasnt FULLY potty trained until last Sept, he was 6 1/2. Both Jack and our 15 yr old DD, with possible Mito continue to struggle with this. Hopefully this will improve for Lucy.<br /><br />I hope Mito Symposium is a possibility for you this year. I also hope to make it since its much closer to us, this is definately the best year to gather the $$$ to go.<br />Continued hugs and prayers for your family--<br />Heidi & JackHeidihttps://www.blogger.com/profile/02241152139861621622noreply@blogger.com