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<span style="font-family:arial, helvetica, sans-serif;"><span style="font-family:arial, helvetica, sans-serif;"><span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-family:arial, helvetica, sans-serif;"><span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-size:medium;">Hi everyone - sorry for the long post...I've been a little preoccupied and w</span></span><span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-size:medium;">anted to give you the update on what's going on with one of our Little Otters.</span></span><br><br><span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-size:medium;">Long story of how we got here, but Lauren has been diagnosed with a very rare (1:15,000) genetic disorder. It's a condition that</span></span> <span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-size:medium;">causes overgrowth in children and Lauren has a handful of the attributes, including enlarged tongue, the 'strawberry' birthmarks on her face, and umbilical hernia. Some of the bigger concerns are enlarged organs, growth asymmetry (one side of the body grows larger than the other), and a significantly increased risk of developing kidney and liver tumors.</span></span><br><br><span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-size:medium;">She'll have blood tests every 3 months till she's 3 or 4 to check her Alphafetoprotein (AFP) levels - an above normal level could be an indication of hepatoblastomas (liver tumors). She'll also have a</span></span><span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-size:medium;">bdominal ultrasounds every 3 months till she's about 8 to check for overgrowth in the organs, the liver tumors and Wilm's tumors (a specific type of kidney tumor).</span></span> <span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-size:medium;">These tests will be alternated so she'll have a test every 6 weeks.</span></span><br><br><br><span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-size:medium;">Additionally, she'll have an orthopedic evaluation becuase she has slight asymmetry (right side is larger) and we'll be meeting with the cranio-facial team in 6 months to look and see what problems her enlarged tongue might cause. The doctor feels that her tongue is on the small side for BWS patients (finally, some good news), so it probably won’t be much of a concern. Possibly just cause some orthodontia problems (open bite), and possibly some speaking (annunciation) issues. She may need speech therapy, which isn't a big deal.</span></span><br><br><br><span style="font-family:'times new roman', 'new york', times, serif;"><span style="font-size:medium;">On a much less serious note, and on top of all this (when it rains, it pours, right?) I have to have foot surgery at the end of the month, so no racing anytime soon!</span></span><br><br><span style="font-family:'Times New Roman';"><span style="font-size:medium;">Anyhoo...we're hanging in there right now, and hoping that the rest of 2008 is much less exciting. <img alt="smile.gif" src="http://files.kickrunners.com/smilies/smile.gif"></span></span><br><br><span style="font-family:'Times New Roman';"><span style="font-size:medium;">I'll keep you posted as much as possible!</span></span><br><br><span style="font-family:'Times New Roman';"><span style="font-size:medium;">Jen</span></span><br></span><br></span><br></span><br></span>
 

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Jen: I'm sorry to hear about Lauren and your foot. Know that our thoughts are always with you. Sending positive vibes your way.
 

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(((Otters)))<br><br>
More Otter Hugs!!!<br><br>
((((((((((((Otters)))))))))))))
 

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{{{{JEN & OTTERS}}}<br><br>
Sorry to hear about Lauren's condition. I'm sure that the doctors will take very good care of her! Good luck with the foot surgery!
 

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Jen - Best wishes for Lauren successfully overcoming her upcoming challenges. Life is so much more frightening/precious with children, so best to you and Mr. Ott as well in what must be a difficult time.<br><br>
Reg.
 

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Jen: I am so sorry for you. You must be devastated, that is really hard news. I can understand what you are going through a little, my DS8 has a genetic condition that was just diagnosed a couple of years ago. It effects his gross/fine motor skills and he is in special ed with a wonderful team of people helping him. But it just hurts so badly when you worry about them. I wish you well ((((((((((((((Otters)))))))))))))))<br><br>
Postive vibes to you and your whole family!
 

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((((otters))))<br><br>
at least you caught it early--so early intervention may help?<br><br>
gl with the foot surgery (ouch)
 

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{{{{{{{{{{{{{{Otters}}}}}}}}}}}}}}}<br><br>
Prayers coming your way, and as always, you are in my thoughts.<br><br>
Thank you for the update.
 

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Oy. Makes my everyday complaints seem small - so I'm sending positive thoughts and prayers your way ~ Sounds like you have an incredible doctor working with her at an early age, that's huge. My best to you, your daughter and the rest of your family!
 

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Well... Good for Lauren to have parents who are taking such good care of her and have the strength to finish the race!! <img alt="banana.gif" src="http://files.kickrunners.com/smilies/banana.gif"> We all know you'll give her all the help and support she'll need!! Good for you!!!<br><br>
Bummer on the foot. Get that patched up and get back out there!!!!!!! Woohooo!!
 

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Thanks everyone - it's definitely been interesting and overwhelming, but I guess the blessing in all of it is that right now, at least, she has no idea what's going on and she's just a happy kid!<br><br>
I appreciate all your support...carry on, tri peeps!!! <img alt="biggrin.gif" src="http://files.kickrunners.com/smilies/biggrin.gif">
 

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You guys will definately find a way to overcome all this, and to teach Lauren to overcome the variety of obstacles that she and you will face, and you will all be stronger for it.<br><br>
And we certainly need some baby otter pics!!
 
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