OT: Two new DXes

iVillage Member
Registered: 06-25-2003
OT: Two new DXes
20
Wed, 08-08-2007 - 8:36pm

As many of you know, I have a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome.

-Paula

visit my blog at www.onesickmother.com

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iVillage Member
Registered: 05-28-2004
Wed, 08-08-2007 - 8:53pm

Paula,

I'm just popping in, but I just wanted to offer ((((hugs)))) in case I don't get back after the kids are in bed.

I can't believe you've been through all of this and you are merely "beat."

It must be nice for all to have a name. I can't believe that story that the nurse would make the executive decision not to call you! Grrrr. But at least Siobhan gets the corrective experience of hearing that their is a medical reason for her symptoms and that she is believable.

Sidney

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iVillage Member
Registered: 08-10-2006
Wed, 08-08-2007 - 9:17pm
Hugs Paula!
It sounds like you had an exhausting day! Is Siobhan's hip dislocation a congenital thing? Reason I ask is that I had a dislocated hip when I was born but they didnt find it when I was born. Hereditary thing, runs in girls in my family. Long story short, I had to have 2 corrective surgeries before the age of 2 to reconstruct my hip, basically to rebuild my left hip, full body casts, etc, plus 2 knee surgeries when I hit my growth spurt in my teens to correct the length of my left leg which at its worst was 2 1/2 inches shorter than the right. My mom said that my hip used to pop out of the socket when she used to change my diaper, used to freak her out!
Christine
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Christine

iVillage Member
Registered: 03-20-2003
Wed, 08-08-2007 - 10:06pm

oh (((Paula))) when I saw that title I just knew what this was.

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Registered: 08-26-2005
Wed, 08-08-2007 - 10:28pm
Paula,
BIG HUGS TO YOU! I haven't been around very much lately so I didn't even know about your dx but I do remember you having some problems a ways back. I'm glad to see you're taking it in your stride. They don't call us the fightin Irish for nothin!
Teresa
iVillage Member
Registered: 12-22-2003
Wed, 08-08-2007 - 10:33pm

Geesh, Paula! Hugs to all of you...get some rest. You've certainly earned it, darlin'!

Amy

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iVillage Member
Registered: 04-28-2007
Wed, 08-08-2007 - 11:07pm

For the love of Dia woman!!! Tell your body and the various genetic links to "give it a rest" already;)

Glad to hear Pete may work his way outa dx; and I KNOW you will be draped all over the schools to get them both PT. What th hell woman...no more dx please,.....( unless it's me talking about my kids,...lol)

Dee

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iVillage Member
Registered: 03-26-2003
Thu, 08-09-2007 - 12:47am

Man oh Man Paula, I know you expected it but still! I am glad Peter's is provisional and may just be the need to have the hypotonia addressed. I will cross my fingers on that one.

Maybe NOW you will get dingleberry nurse to listen.

Renee

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iVillage Member
Registered: 06-25-2003
Thu, 08-09-2007 - 9:34am

Christine,


I do remember a neighbor of ours had a girl with a congenital hip dislocation. That woman

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 06-25-2003
Thu, 08-09-2007 - 9:59am

hehehe


You don't know the half of it!

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 06-25-2003
Thu, 08-09-2007 - 10:03am

Well,

-Paula

visit my blog at www.onesickmother.com

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