tag:blogger.com,1999:blog-379680977569207453.post2856343054242806092..comments2014-03-12T18:24:16.332-04:00Comments on Stepping Out of the Boat: Our Adventure to the U of MJeanniemb1http://www.blogger.com/profile/06065771735497593040noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-379680977569207453.post-18445799391566564392011-01-24T23:58:11.869-05:002011-01-24T23:58:11.869-05:00Thank you for commenting!
It is so very frustrat...Thank you for commenting! <br /><br />It is so very frustrating to not have a doctor that really knows what to do. But they think that there is nobody that can do a better job than them. We have found a few docs that we trust to care for Maggie out here but they don't know what to do for her either. I'm just glad we have options to travel or connect over the phone with a good doctor. <br /><br />I definitely think that this is how we continue to go on is because there are other people to connect with in similar situations. With all of the unknowns of this disease sometimes the parents know better than the doctors and its nice to be able to have other families to ask or discuss with. <br /><br />Thank you so much for keeping Maggie in your prayers! I will do the same for your sweet Clara!Michelle and Seanhttps://www.blogger.com/profile/05523818279110462492noreply@blogger.comtag:blogger.com,1999:blog-379680977569207453.post-74615607595939975902011-01-24T17:35:36.529-05:002011-01-24T17:35:36.529-05:00Sending lots of good thoughts and prayers your way...Sending lots of good thoughts and prayers your way. SO glad to hear Clara is getting such good care!!Valerie @ Inner Child Funhttps://www.blogger.com/profile/01066972931053719521noreply@blogger.comtag:blogger.com,1999:blog-379680977569207453.post-48209922761737700952011-01-23T23:15:47.026-05:002011-01-23T23:15:47.026-05:00Hi there,
You left a question on Clara-Leigh'...Hi there, <br /><br />You left a question on Clara-Leigh's blog. So I thought I would check out your blog and answer!! <br /><br />We actually live in Utah so Atlanta is not really close. We were diagnosed by Dr Shoffner and had a follow up with him too. Our doctors try to work with him but they have run out of ideas for Maggie. So this leads us to Dr Koenig. Our doctors here are really nice but because we don't know what gene is causing this they don't think she can really have mito. Its crazy really because Dr Shoffner has told them that she does have this and thinks he will know the gene in the next couple of years. Our doctors are nice but they really have no idea what to do for Maggie. So their suggestion is we make her comfortable since she is clearly not well and in, what they believe is, her end of life stage. <br /><br />Oh and by the way, I would've been exactly the same way as you wrote in this post. And my husband sounds a lot like yours. I think my husband thinks I'm a lunatic at times. Especially when we are trying to get to a doctors office and even moreso if we have never been there before.<br /><br />I pray these doctors are able to help some!!Michelle and Seanhttps://www.blogger.com/profile/05523818279110462492noreply@blogger.comtag:blogger.com,1999:blog-379680977569207453.post-61094045555978230472011-01-21T22:07:18.864-05:002011-01-21T22:07:18.864-05:00You crack me up!!! Sorry......uuuhhh.....I mean, f...You crack me up!!! Sorry......uuuhhh.....I mean, first, I am SO SORRY it was such a production to get to the appointment, but you REALLY write in a way that I felt like I was there, in the body of a fly, buzzing along, watching the whole thing. I KNOW it was not at all funny then, but the way you shared the experience....and yes, you and I would be killed together in a fight as we would both turn to puddles on the sidewalk!!! I can come across very professional and serious as needed, but there is a point I reach when cry is all I can do!!!!<br />Glad the appointments went well. I am praying for your wisdom and your safety in the upcoming additional travels to the next appointment! <br />We see our mito doc in Houston Tuesday...off to blog!!<br />Bunches of love, high-fives, and hugs!! Oh, and like a say here, my life is an athletic event!!!!<br />Clara-LeighClara-Leighhttps://www.blogger.com/profile/12698696005034922293noreply@blogger.comtag:blogger.com,1999:blog-379680977569207453.post-73778139170650977612011-01-21T21:18:13.398-05:002011-01-21T21:18:13.398-05:00Sending hugs to a terrific mom who places her fami...Sending hugs to a terrific mom who places her family's needs above her own. <br />Ben and I listen each night during his bath-timeto the recording of you singing. <br />"Through the fire my weakness is made strong.<br />Just hold on, our lord will show up. And he will take you through the fire again." We love your voice and the life lessons you share. You and your family remain in our prayers.Rayehttps://www.blogger.com/profile/13628244372074333270noreply@blogger.com