November 2009 Blog Posts (27)

the about me section and my family

I have gone thru the motions of adding information about me and my family to those fields, I click save and go to my page....it is there and looks fine. However, later on it is gone. Can anyone shed light on why. I am new to this and want to have a complete page. Is there a character count that I might be exceeding? Perhaps it is there and I just don't see it. Help. This is small cookies compared to the fresh diagnosis of DMD. My adopted son Christian has presented symptoms since age 3 and… Continue

Added by Jenise Furman on November 7, 2009 at 10:51pm — 3 Comments

Can someone explain Isomers?

So our little Trey has been diagnosed with a single deletion of exon 52. With that and all the research I have done I understand that he needs to skip exon 51 or 53 to become 'inframe'...and I also understand that research is currently being done for boys with this deletion.



A huge question I do have is I was told that if a child is missing exon 52 or any higher then that then they are missing isomers in their brain of DP140 and DP260. Little Treyman is very bright but it does seem… Continue

Added by Cori on November 5, 2009 at 3:35pm — 19 Comments

Does anyone have a letter to their insurance company asking for authorization for medical treatment outside their state?

I'm dealing with insurance company to authorize me for a consultation to see Dr. Wong , does anyone have a sample of a letter used in the past and was successful, please advise thank you

Added by mariela pedroza on November 5, 2009 at 3:01pm — 3 Comments


Staff
Jenny's Wedding

When you have children, the concept of marriage/partner/weddings comes to mind now and again. I scrutinize everyone – ask the girls! I try my best not to state my opinion, but it’s probably obvious. In the past, when relationships fail, I have been known to be a bit vindictive…ok, even thinking about voodoo – shredding one young man’s photograph and later hearing a cat vomited on his bed. It made me pretty happy! As you might imagine, Jenny and Michelle may at times be reluctant to make… Continue

Added by Pat Furlong on November 4, 2009 at 10:43am — 9 Comments

Wyatt is finally walking

Wyatt is now 20 months old and the weekly PT is finally paying off. He's taking steps all on his own! I kept hearing that he'll walk don't worry, but until you see your sweet miracle walk with your own 2 eyes, it's not quite real.

Added by Wyatt's Mommy, Melissa on November 3, 2009 at 11:08pm — 6 Comments

Information on starting Medical care for Giancarlo

Does anybody have any guidance for us on selecting the right medical group in California to work with DMD, we leave in OC and I'm a bit confused on where do we start when it comes to selecting the best doctors, I need help please.

Added by mariela pedroza on November 3, 2009 at 1:39pm — 4 Comments

Hello, my son Giancarlo 7' was recently diagnosed 4 days ago with DMD ...

Just wanted to share with the community and I had my first MDA counseling meeting today, I was given a lot of information, any advice for this new change in our family?

Added by mariela pedroza on November 2, 2009 at 7:23pm — 2 Comments

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