tag:blogger.com,1999:blog-80226535695452401032024-03-19T01:43:26.794-07:00Parker's Purpose"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11
Our unexpected journey with Downs Syndrome, babies with heart conditions, T21, and AVSD.mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.comBlogger149125tag:blogger.com,1999:blog-8022653569545240103.post-32843761952195842452012-01-15T16:54:00.000-08:002012-01-15T16:54:31.186-08:00Race for the Extraordinary!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWdppcnyudggDA0DqqpXPgboDottzV0DdDkLdt7cIemV3RTjFnn_e5_5k1JnKUKHtQ6UB_gbhc2misnyN5p-_cgG9IqFwv2BYsUf1P2laSD3dQ9z-YCYUIFt9sL89XtHgtTiEE6oeGHR-T/s1600/claprace.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWdppcnyudggDA0DqqpXPgboDottzV0DdDkLdt7cIemV3RTjFnn_e5_5k1JnKUKHtQ6UB_gbhc2misnyN5p-_cgG9IqFwv2BYsUf1P2laSD3dQ9z-YCYUIFt9sL89XtHgtTiEE6oeGHR-T/s320/claprace.jpg" width="320" /></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUYPyU9wk6gXr5AtE2K6z62HDQedBlEOwXE0Vx4rRbCkGCUMUwV8GIfAeMPSHnil1hNC-Ru4CgKMD0IMI1C7fOG3b_71dWhcb6kKT0DEaAadvvdtfijy0_04il5t18a_3Eaj2ay3IMmWkP/s1600/rdsback.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUYPyU9wk6gXr5AtE2K6z62HDQedBlEOwXE0Vx4rRbCkGCUMUwV8GIfAeMPSHnil1hNC-Ru4CgKMD0IMI1C7fOG3b_71dWhcb6kKT0DEaAadvvdtfijy0_04il5t18a_3Eaj2ay3IMmWkP/s320/rdsback.jpg" width="213" /></a></div>What a fantastic day today! Weather could not have been more perfect and I finished in 1:44:49. Not too bad for 13.1 miles at 41! I was pacing really well for the first 15K, lost a bit of ground in end, but so pleased! Best of all we raised $4,000 for Parker's Heroes, benefitting Research Down Syndrome! Looking forward to another, maybe WDW!!! Visit our page to see our efforts! Words can;t express how grateful we are to all of you!!!<br />
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<a href="http://www.crowdrise.com/ParkersHeros/fundraiser/LaraFont">http://www.crowdrise.com/ParkersHeros/fundraiser/LaraFont</a>mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-51535727326826658852012-01-07T05:27:00.000-08:002012-01-07T05:27:51.888-08:00Have You seen this?Talk about this has been going around the past few days...started on a DS bloggers site (when I first saw the post) <a href="http://noahsdad.com/target-down-syndrome/">http://noahsdad.com/target-down-syndrome/</a> talk about the fact that this precious child wasn't part of a modeling campaign for "differently abled" children (like the ToysRUs catalog), but simply just another smiling child in a weekly circular. This warms my heart, most of you knwo our kids have been print models most of their lives. I remember the kids asking when Parker was first born when he'd be mdeling with them...always pained my heart in some ways. Hadn't thought about it in a long time until this started going viral on the web...Things like this show me that is a real possibility!<br />
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<a href="http://thelook.today.msnbc.msn.com/_news/2012/01/06/10006260-targets-newest-model-is-an-adorable-6-year-old-with-down-syndrome">http://thelook.today.msnbc.msn.com/_news/2012/01/06/10006260-targets-newest-model-is-an-adorable-6-year-old-with-down-syndrome</a><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1phXpJ9ahZuCqJQjdEqUhDcCkLKtcRPOVFH9op84Fi-nGuuX2I1DUWSynZ47R4d380d6ihwLIlvVaQ-H5sVhOr1X8F4T6OXbuVDBa-IXPm7numJuuZrU-87yw_LvMtYDF24FXoz7Df7NB/s1600/parkerbelt.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1phXpJ9ahZuCqJQjdEqUhDcCkLKtcRPOVFH9op84Fi-nGuuX2I1DUWSynZ47R4d380d6ihwLIlvVaQ-H5sVhOr1X8F4T6OXbuVDBa-IXPm7numJuuZrU-87yw_LvMtYDF24FXoz7Df7NB/s320/parkerbelt.jpg" width="213" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtO2yyrLsdd7LeQ-8_ET-Hq8_gXVfbmvU_nDYN0gU5UlTfiBzyEmXHImwkn15hUNSAC_gRXK6Qh8niCAidbyXx2sSSx3ZuwQ-pBZuLF68S3sRtHxwZAii8zwgCrIOajYuRBwqhhTcAEMUo/s1600/ParkerPopiel.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtO2yyrLsdd7LeQ-8_ET-Hq8_gXVfbmvU_nDYN0gU5UlTfiBzyEmXHImwkn15hUNSAC_gRXK6Qh8niCAidbyXx2sSSx3ZuwQ-pBZuLF68S3sRtHxwZAii8zwgCrIOajYuRBwqhhTcAEMUo/s320/ParkerPopiel.jpg" width="266" /></a></div>Go Target and Nordstroms! We are ready when you come a-calling! We are a willing model and can pose with the best of them!mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-38933231115457587252012-01-04T05:58:00.000-08:002012-01-04T05:58:23.113-08:00Happy New Year 2012!The holidays have come and gone, the new year has started! So many terrific things happening, looking forward to what God has in store for 2012. Parker is keeping us all busy, he is loving school, has found a new "old" favorite in Blues Clues. His vocabulary now includes, "notebook, think, blues, table", all courtesy of the videos! This was Taylor's favorite 10 or so years ago, finding these videos have been a trick, but thankfully DirectTV still has them playing daily. Parker's grown 3.5 inches in 3 months thanks to our new endocrin and treatment, now is back on the "typical" chart at 30%. After almost a year of little to no growth we are so pleased. His problem solving skills are fantastic, speech continues to come along (although not as fast as Mom would like). His vocabulary is now about 45-50 words, we know he understands everything, just working on getting those words to verbalize. His new favorite word is STOP, when the kids get too close he pushes away and yells STOP as loud as he can. In this house one has to fend for oneself! He's learned to snap his fingers which is hysterical! Health has been fantastic, we have our annual cardio visit in a few weeks and our hoping to move to bi-annual visits them. Only one additional snuffy head for Parker (two in his lifetime) and no ear problems or setbacks from that cold. We had a Christmas trip to WDW and he was a fast favorite of all the cast members. He loved Santa, the characters, and the parades. It truly was a magical trip (always is)! Uncle Matt was here for Christmas which is such a blessing, wish he was closer to TX! Maybe we will make a CA Disney visit this year. Lots more to say, but that is the quick update. Getting ready to run the half marathon on January 15th to benefit Research Down syndrome, we met our fundraising goal, but certainly appreciate any additional donations - it is not too late!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-GLlD-bjX69U/TwRap5kgK0I/AAAAAAAABHE/jW1B4QQH1bc/s1600/IMG_1266.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-GLlD-bjX69U/TwRap5kgK0I/AAAAAAAABHE/jW1B4QQH1bc/s320/IMG_1266.jpg" width="213" /></a></div>mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-45808991200136511242011-12-09T04:57:00.000-08:002011-12-09T04:57:10.162-08:00Merry Christmas!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuMoZiwEoyuI6RgUi-K0lPijGu6ihTTa_UEyI8-MloPiemRaFIJaCjlnDDjZ7lAfYlKTCZ6PGFUuq_FhUKW6Fsg3-CXC2_NmNrO67rcB2EVNFbjbGfSG_NExDc3svgI9EbEa2zFUh3_Zl5/s1600/card.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="228" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuMoZiwEoyuI6RgUi-K0lPijGu6ihTTa_UEyI8-MloPiemRaFIJaCjlnDDjZ7lAfYlKTCZ6PGFUuq_FhUKW6Fsg3-CXC2_NmNrO67rcB2EVNFbjbGfSG_NExDc3svgI9EbEa2zFUh3_Zl5/s320/card.png" width="320" /></a></div>mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com2tag:blogger.com,1999:blog-8022653569545240103.post-73257210230208418352011-11-13T13:50:00.000-08:002011-11-13T13:50:07.632-08:00Parker's Heroes<a href="http://www.crowdrise.com/ParkersHeros/fundraiser/LaraFont/1/return/success/success">http://www.crowdrise.com/ParkersHeros/fundraiser/LaraFont/1/return/success/success</a><br />
HERE'S THE STORY:<br />
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On January 15, 2012, I will be running the Houston Half Marathon. I'm running for Research Down Syndrome(RDS) a non-profit that supports cognitive research for people with Down syndrome. In the last 5 years we have had great advances in biomedical therapies to treat the cognitive impairment of people of all ages with Down syndrome. The potential of these treatments to address Down syndrome cognitive dysfunction is tremendous - improving memory, learning and communication – and expanding and enhancing life opportunities for these individuals. Obviously this is VERY important to our family, please support my efforts! No amount is too small! Do it for our precious son, Parker, he deserves to have the same things we all have in life!! <br />
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I'm humbled by those that have already supported our efforts, thank you simply isn't enough!! <br />
<div style="float: left; margin-left: 25px; width: 170px;"><a class="custTopRight sponsorProject" href="javascript:;"></a><a class="custTopLeft sponsorProject" href="javascript:;"></a><a class="custTopMiddle sponsorProject" href="javascript:;"></a><a class="largeButtonTop javascript sponsorProject" href="javascript:;"> </a><a class="largeButton javascript sponsorProject" href="javascript:;">DONATE</a><a class="largeButtonBottom javascript sponsorProject" href="javascript:;"> </a><a class="custBotLeft sponsorProject" href="javascript:;"></a><a class="custBotRight sponsorProject" href="javascript:;"></a><a class="custBotMiddle sponsorProject" href="javascript:;"></a><br />
<div class="custSpacer10"></div><div class="statBubble"><div class="topRight"></div><div class="topLeft"></div><div class="topMiddle"></div><div class="content"><h3>$800</h3><span class="earned">RAISED OF $2,500 GOAL</span></div><div class="botLeft"></div><div class="botRight"></div><div class="botMiddle"></div></div><div class="therm_outer"><div class="therm_pct">32%</div><div class="thermometer" style="width: 51px;"></div></div><div class="statBubble"><div class="topRight"></div><div class="topLeft"></div><div class="topMiddle"></div><div class="content"><a class="donations" href="http://www.crowdrise.com/ParkersHeros/fundraiser/LaraFont/1/return/success/success#comments">DONATIONS</a><br />
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</div></div></div></div><div class="botLeft"></div><div class="botRight"></div><div class="botMiddle"></div></div><a class="largeBlackButtonTop javascript jtbtn" href="javascript:;" id="jt_top"> </a><a class="largeBlackButton javascript jtbtn" href="javascript:;" id="jt_mid"></a></div>mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-60188933209860011802011-10-28T06:02:00.000-07:002011-10-28T06:17:16.259-07:00Action Shots<a href="http://2.bp.blogspot.com/-lNEXKOTQy44/TqqrEwniDsI/AAAAAAAAAEE/yfwLab0-X7M/s1600/IMG_0191.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://2.bp.blogspot.com/-lNEXKOTQy44/TqqrEwniDsI/AAAAAAAAAEE/yfwLab0-X7M/s200/IMG_0191.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668531179257728706" /></a><br /><a href="http://2.bp.blogspot.com/-WRfDH9ib2VM/TqqrEdzEPnI/AAAAAAAAAD4/tkSs5z3dlt0/s1600/IMG_0190.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://2.bp.blogspot.com/-WRfDH9ib2VM/TqqrEdzEPnI/AAAAAAAAAD4/tkSs5z3dlt0/s200/IMG_0190.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668531174205832818" /></a><br /><a href="http://3.bp.blogspot.com/-kWScdwPfcF4/TqqrD7x7DiI/AAAAAAAAADs/dcpbWVAse4A/s1600/IMG_0187.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://3.bp.blogspot.com/-kWScdwPfcF4/TqqrD7x7DiI/AAAAAAAAADs/dcpbWVAse4A/s200/IMG_0187.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668531165074230818" /></a><br /><a href="http://3.bp.blogspot.com/-jizUDlxgfTM/TqqrDpYcGiI/AAAAAAAAADc/v5fW1_xi26w/s1600/IMG_0177.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://3.bp.blogspot.com/-jizUDlxgfTM/TqqrDpYcGiI/AAAAAAAAADc/v5fW1_xi26w/s200/IMG_0177.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668531160135506466" /></a><br /><a href="http://1.bp.blogspot.com/-9iJorSNCq7Q/TqqrDfPTwFI/AAAAAAAAADU/zKMcJWTW1zI/s1600/IMG_0165.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://1.bp.blogspot.com/-9iJorSNCq7Q/TqqrDfPTwFI/AAAAAAAAADU/zKMcJWTW1zI/s200/IMG_0165.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668531157412855890" /></a><br />2 days of a few action shots..Parker has been doing forward rolls for months now, it is hysterical to watch him with the girls as they tumble around the house! He is such an imitator, tries to keep up with the other kids no matter how crazy. Yes, his neck is fine, he knows how to "tuck and roll." The other picture is a football pose, he's saying "hike" Guess having football and baseball on in the background has left its mark!!mfonthttp://www.blogger.com/profile/15332355422065172010noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-16588588048538740632011-10-26T05:07:00.000-07:002011-10-26T05:23:15.840-07:00Wordless Wednesday..sort of..<a href="http://2.bp.blogspot.com/-kAdqjZYh1K4/Tqf7f9klK6I/AAAAAAAAACk/rahaUR7RScg/s1600/IMG_0103.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://2.bp.blogspot.com/-kAdqjZYh1K4/Tqf7f9klK6I/AAAAAAAAACk/rahaUR7RScg/s200/IMG_0103.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5667775182591568802" /></a><br /><a href="http://4.bp.blogspot.com/-gwPG6MIpKv4/Tqf7f3X3HnI/AAAAAAAAACU/cqM2w2Tn0H4/s1600/IMG_0092.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://4.bp.blogspot.com/-gwPG6MIpKv4/Tqf7f3X3HnI/AAAAAAAAACU/cqM2w2Tn0H4/s200/IMG_0092.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5667775180927606386" /></a><br /><a href="http://2.bp.blogspot.com/-DriFKs0iIVc/Tqf7fqrCg4I/AAAAAAAAACM/hNDcr-3qe7U/s1600/IMG_0071.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://2.bp.blogspot.com/-DriFKs0iIVc/Tqf7fqrCg4I/AAAAAAAAACM/hNDcr-3qe7U/s200/IMG_0071.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5667775177518384002" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDW6n535s80QTBY7GswNIzrqOGUp-4qyZjhbGK8UcDtsnxlMIkUZmsJr0dGlOyiwktWfFSZN9LC_IHJrFl_mBex2JaikzX6_IglCe01ls3RzBnIhotf5k8zQ5EULFf47ux3PPCs5DnK44g/s1600/IMG_0071.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDW6n535s80QTBY7GswNIzrqOGUp-4qyZjhbGK8UcDtsnxlMIkUZmsJr0dGlOyiwktWfFSZN9LC_IHJrFl_mBex2JaikzX6_IglCe01ls3RzBnIhotf5k8zQ5EULFf47ux3PPCs5DnK44g/s200/IMG_0071.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5667773495904228354" /></a><br /><a href="http://2.bp.blogspot.com/-vwQSEhhOw4g/Tqf59oLWnaI/AAAAAAAAAB0/qn2uGceeXho/s1600/IMG_0064.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://2.bp.blogspot.com/-vwQSEhhOw4g/Tqf59oLWnaI/AAAAAAAAAB0/qn2uGceeXho/s200/IMG_0064.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5667773493221432738" /></a><br /><a href="http://2.bp.blogspot.com/-NJYddSDfpNE/Tqf59P78gnI/AAAAAAAAABs/4o_nfDKDqHQ/s1600/IMG_0058.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://2.bp.blogspot.com/-NJYddSDfpNE/Tqf59P78gnI/AAAAAAAAABs/4o_nfDKDqHQ/s200/IMG_0058.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5667773486714356338" /></a><br /><a href="http://1.bp.blogspot.com/-tjV9SUDbXDE/Tqf58pIVOtI/AAAAAAAAABc/3FLShoFo4GU/s1600/IMG_0056.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://1.bp.blogspot.com/-tjV9SUDbXDE/Tqf58pIVOtI/AAAAAAAAABc/3FLShoFo4GU/s200/IMG_0056.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5667773476297325266" /></a><br /><a href="http://2.bp.blogspot.com/-P1vN4KZmQvU/Tqf58tXqEkI/AAAAAAAAABQ/EJmTwhKej6Y/s1600/IMG_0045.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="http://2.bp.blogspot.com/-P1vN4KZmQvU/Tqf58tXqEkI/AAAAAAAAABQ/EJmTwhKej6Y/s200/IMG_0045.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5667773477435347522" /></a><br />Meet Parker, our "jack in the box.." I'm proud to say Parker has the same affinity for my shoes that Taylor did at this age...he continues to be in to absolutely everything. This week we have slammed our fingers into the shower door and the kitchen drawers, hoping to hang on to his fingernails, even with child proofed drawers they still slam pretty well! Life is good, we are blessed...celebrated Madeline's 8th birthday this weekend..time flies, seems like yesterday when she was born....bet you can't guess the theme..Minnie Mouse gymnastics party...I of course am getting younger by the day..HA!mfonthttp://www.blogger.com/profile/15332355422065172010noreply@blogger.com1tag:blogger.com,1999:blog-8022653569545240103.post-59141559638829118852011-10-14T14:53:00.000-07:002011-10-14T14:53:10.685-07:00Support DS treatment and be entered to win a trip to Costa Rica!!It is that time of year!! Not only is it Down syndrome awareness month, but time for our annual Changing Minds Fountation golf tourney! Changing Minds Foundation is a non-profit organization which offers treatment for many of the symptoms and problems of Down syndrome. We are having a golf fundraiser on October 28th in Houston, TX. I know many of you are thinking:<br />
<br />
I don't golf........<br />
I don't live in Houston, TX.........<br />
How can I help?<br />
<br />
Well, you can participate in a Golf Ball Drop and a chance to win an all expense paid trip for 2 to the Four Seasons Resort in Costa Rico at Papagayo. Purchase as many golf balls as you’d like for $25 each. We’ll assign a number to each golf ball purchased and on the day of the golf tournament all balls will be dropped from a helicopter hovering over the driving range. The first ball to land in the designated hole (or closest to the pin) wins the trip. The Ball Drop is limited to 2,000 balls and the last day to purchase golf balls is October 27th, 2011. We’re a 501c 3 charitable organization so your donation is tax deductible.<br />
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To purchase golf balls and see a video of an actual Ball Drop go to:<br />
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<a href="http://www.changingmindsfoundation.org/golf_tournament.html">http://www.changingmindsfoundation.org/golf_tournament.html</a><br />
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Donations will go to education and continued research and treatment of individuals with Down Syndrome. We’re in the home stretch and truly need your support. We have 2000 balls to sell and have only sold 150, so please consider making a donation to this worthy cause. <br />
Who knows.....you might win the trip !!!!<br />
Trip includes: 4 nights at the Four Seasons Resort, Costa Rica at Papagayo, airfare and transfers for two people, 2 rounds of golf at their Arnold Palmer golf course - it is an Audubon Sanctuary filled with monkeys, parrots and native trees of Costa Rica, as well as $500 spending cash.<br />
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DO IT FOR PARKER! How can you resist his cuteness? :) Don't you know chairs and couches are for jumping???<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz5HBkzez7a6GOI8E2fupwNDtWyyJ-m4HBByggFAJfhwGejnyl9mPrhaxykwx94rPud-i8wREfE0_TH6W78fJmAcyW2o1150dvQsbR_iEisM0mzKPG8XWOfE4zxSnap_PmyPnYiJT3BlOY/s1600/trouble.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz5HBkzez7a6GOI8E2fupwNDtWyyJ-m4HBByggFAJfhwGejnyl9mPrhaxykwx94rPud-i8wREfE0_TH6W78fJmAcyW2o1150dvQsbR_iEisM0mzKPG8XWOfE4zxSnap_PmyPnYiJT3BlOY/s320/trouble.jpg" width="213" /></a></div>mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-8379814789051423352011-10-08T05:23:00.000-07:002011-10-08T05:23:10.769-07:00Jon's worms...I had the chance to meet Jon this summer and learn first hand about his research...amazing stuff! He will be speaking again this month in Austin as well. <br />
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<a href="http://www.dsrtf.org/document.doc?id=49">http://www.dsrtf.org/document.doc?id=49</a>mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-70275766565884592722011-10-03T20:36:00.000-07:002011-10-03T20:36:17.888-07:0031 for 21 - Day 1..and no, I won't make 31 posts...I'll never make 31 for 21 as evidenced by my lack of posting these days, but...I feel it IS important to be a part of "31 for 21!" DS awareness month is October and our hope is that we can continue to encourage each other in our journey and meet new friends along this path of life! A life full of richness and blessing! Yes, it can be difficult, yes, it can seem unfair at times, but what 2 years has brought to our family has made us stronger and God's grace has been so evident! Parker is a "typical" 2 year old, he's "in" to everything, never slows for a minute and is gaining new skills daily. His vocabulary is up to about 40-45 understandable words (and a constant conversation all day long we don't always understand, but we shake our head and talk back smiling all the while). This week his new words are "grandpa" "keys,"and "baseball" very important at our house! We are working on reading sight words and contemplating math next. My Mom bought the dreaded "potty seat" although I must admit we haven't started that process just yet. I've potty trained 3 kids already, not in a huge rush to start with #4..I'm secretly hoping that preschool will get him started, LOL. Parker has mastered the SRJ "horns and flutes" to everyone's dismay and can frequently be found directing the animals like the "pied piper" 25 blows sounded like a huge accomplishment when we first started, let's just say now the whistles just get louder...we are perfectly content with 5-10 blows...the party horns and harmonica type whistle are so shrill, not sure if those are meant to torture families? Hard to capture him being still these days (unless he's sleeping), he's running everywhere, new favorite is walking on the curb like a balance beam outside..he thinks "chase" is the best game ever...anytime you are looking for a running buddy come on over! <br />
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Lots of exciting research on the horizon, hoping this year during DS awareness month we can make a push to join together and fund some of these research dollars needed to help our kids. They deserve to have the same freedoms and independence we all enjoy! Dancing and playing flute, oh so FUN!!!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Z9pv8l0Yxz9s5bIg9cU-pvWBg0o2mdRz-ocktrrff7AIMCHCONMCs4gX8vVRbnt8Ye-NfNlsK9Yrzkjcl2eGeeHEdrNuj_K_hyphenhyphenEWHJHkUg2CRXeLtkdx6cZjez6p6Wjt__SmjAzEdoww/s1600/chase.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Z9pv8l0Yxz9s5bIg9cU-pvWBg0o2mdRz-ocktrrff7AIMCHCONMCs4gX8vVRbnt8Ye-NfNlsK9Yrzkjcl2eGeeHEdrNuj_K_hyphenhyphenEWHJHkUg2CRXeLtkdx6cZjez6p6Wjt__SmjAzEdoww/s320/chase.jpg" width="213" /></a></div>Be blessed!mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-57179598097390618472011-09-05T14:34:00.000-07:002011-09-05T14:34:27.198-07:00Goodbye Summer, Hello Fall!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCCvbnSxkigWJuGkxzhMFQvQrXhTBIwfqWnI8L-MLH4TiNKSF0jQDgDA4BcL1clX_85mVT4JIyF2AtMVV0ls-A5HIicEapnCuIH2An2kULnOVT8uoXQyRmFBZj0M5Q-mhAcE9gRaeOFTPW/s1600/IMG_8757.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCCvbnSxkigWJuGkxzhMFQvQrXhTBIwfqWnI8L-MLH4TiNKSF0jQDgDA4BcL1clX_85mVT4JIyF2AtMVV0ls-A5HIicEapnCuIH2An2kULnOVT8uoXQyRmFBZj0M5Q-mhAcE9gRaeOFTPW/s320/IMG_8757.JPG" width="320" /></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_UzJOphGy6YEFvwGY8fHqMm9BcZHcK0a1Ux9ZfFev8Y88R2tzYd26Jx4WyVeacIUIqCXv08QsBFoGqRkuovDjC-JxeV1JjLqskcu9tEYQF-aJbyEc29xzEozLwbzVcjiux0h0ZYKBthUM/s1600/IMG_9619.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_UzJOphGy6YEFvwGY8fHqMm9BcZHcK0a1Ux9ZfFev8Y88R2tzYd26Jx4WyVeacIUIqCXv08QsBFoGqRkuovDjC-JxeV1JjLqskcu9tEYQF-aJbyEc29xzEozLwbzVcjiux0h0ZYKBthUM/s320/IMG_9619.jpg" width="213" /></a></div>Fall started with a cold front...ha-ha, we left the record heat of 106 to have low-mid 90's this long weekend, but honestly it DOES feel cooler!!! Not ready to break out the fall clothes anytime soon, but today is a good day to reflect on the summer! It has been a busy one, long gone are the "lazy, hazy, days of summer," I find myself a bit reflective wondering how maybe next summer we can capture those? It was a summer of baseball, theater (Madeline was in Wizard of Oz and summer plays, Annie and Willy Wonka), gymnastics, sleep away from home church camp (Mallory for the first time), and Parker made so many gains. He turned 2 end of May, has now been walking for 7 months (he runs everywhere) and speech continues to come along(not nearly fast enough for me, but I'm working on that). He never slows unless he is sleeping and we are all thankful he still takes a nap at this point! Last week at therapy he shocked the OT, my mom was packing up, he grabbed the bag, and said "eat banana." The proceeded to get the banana out and eat it. We take this speech for granted, she was so thrilled. Not only was it a couplet, it was used at the proper time and in proper form, go figure this is a big deal? The other thing he continues to do is know how to follow instruction, we tell him to "throw it in the trash," he goes to throw it away. Unfortunately he likes to "throw it in trash," so better watch what is laying around (if it doesn't go there it goes in toilet to be flushed). He loves to blow bubbles and blow on his flute (SJR would be proud!) He will go to the back door, say "bubbles" and out we go. He can use the stick to dip and blow no help needed. he has watched the girls hula hoop and loves to practice hooping himself. He continues to have excellent fine motor and feeding skills. Can use a fork and spoon to self feed (although messy) no issues and is coloring well by himself. He can strap and unstrap himself in his carseat and highchair (not always the best skill for a 2 yr old in a moving vehicle). His new fascination is the door handle and the power window, good thing we have child locks! He started preschool last week at our church preschool where all our other kids go (see my earlier post) and the other kids are almost a month into the new school year. Having a 7th, 4th, and 2nd grader keeps my evening hours busy, homework takes a schedule as do keeping up with activities. Not much time left to update the blog I'm afraid. I do know this without certainty, our life has purpose, we have confidence in what we are doing to help Parker(and all the kids) succeed and it is working! Medically speaking he is doing really well, no issues to speak of, his growth hormone results came back (he failed miserably, but we already knew that) growth hormone treatment started 11 days ago and he's already grown 1 inch! He's physically strong, continues to be so healthy, no issues with sleep apnea or stomach problems (no ear infections, colds, etc..) and we are so grateful for God's goodness. All his Drs are always amazed at his progress. This is no easy task with his supplement, therapy schedule and neurodevelopmental plan for at home (aside from the countless Dr appts and other activities), but amazingly it seems routine. I remember when we first started and it all seemed so overwhelming, not so anymore. Guess one adjusts and when one sees results it becomes second nature. Parker had his first haircut, amazingly as sparse as his hair is it has finally grown and needed a trim especially around the sides and back of neck. Sorry i missed the pictures of that, 4th child I'm afraid...He will start Little gym this week (one more place to run him ragged to try to tire him out, LOL) and who knows what else we will find to take part in. Life is full, God is good, and we feel blessed beyond measure! Some favorite pics from our summer that flew by! XOmlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com1tag:blogger.com,1999:blog-8022653569545240103.post-17424687984782279562011-09-04T05:18:00.000-07:002011-09-04T05:18:54.514-07:00World Experts Meet in Cambridge to Discuss Treatments for Down SyndromeFor those of you that aren't aware, another fantastic opportunity to gather and hear the leaders in the field, I can't make it to Cambridge, but I am so excited for this opportunity. We expect great things from this symposium, if you are interested and need details email me and I can put you in contact with the host.<br />
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World Experts Meet in Cambridge to Discuss Treatments for Down Syndrome<br />
The treatability of Down Syndrome is gaining evidence and support, but remains the "holy grail" for parents and doctors. A rare gathering of expert scientists will plan the next stage in human treatments for Down syndrome. The wider context of the impact on people with Alzheimer's with be discussed.<br />
London, United Kingdom, September 01, 2011 --(PR.com)-- Rarely are such people all in the same room together, but September 17th sees the meeting of truly great minds in Cambridge at the Welcome Genome Campus. The subject they'll be discussing? Down syndrome treatments.<br />
There are at least 30,000 children and adults with Down Syndrome (DS) in the UK and about 700 new babies every year. For years it has been thought that nothing can been done to help this group of people who face difficulties with learning and memory as well as increased risk of physical problems like congenital heart disease as a result of inheriting an extra copy of chromosome 21.<br />
What has felt impossible by most has become a reality for scientists at the cutting edge of understanding genes and their interplay on the developing brain. "Let's define the genes that are responsible...and let's treat those genes," Dr William Mobley, Professor and Chair of the Department of Neurology at Stanford University, has recently said. He adds that hopefully "...there are two or three different targets that are very treatable."<br />
The wider hope is that it will help everyone who develops Alzheimer's Disease, as all people with DS show brain changes of Alzheimer's.<br />
The conference will be opened by Madam Jerome Lejeune, wife of the late Prof. Jerome Lejeune who dedicated his life to the discovery of a cure for Down Syndrome. His work continues at the Foundation Jerome Lejeune in Paris, with the support Dr. Mobley will be chairing the day and the aim of the gathering will be creation of international research alliances to speed this life changing work.<br />
The conference has been organised by a UK charity, the Downs Syndrome Research Foundation UK, founded to get DS up the agenda for the researchers and the Government. Dr Elliott, the chair of the DSRF, concludes "We are at a crucial moment in the field and possibilities for the future are hopeful. Join us and see why."mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-18344410565287993812011-09-02T06:12:00.000-07:002011-09-02T06:12:20.003-07:00Parker's First day of School!Yesterday was Parker's first day at school. He's going to our church preschool where all 3 of our other kids went. He's starting earlier than they did, but we decided 2 days a week would be good for him and Grandma needs a few hours to herself! Parker is running everywhere (as evidenced by blurry pics), loving and living life to its fullest. No tears were shed yesterday as he went to class, for some reason I was slightly apprehensive about this decision, but God always delivers even in the smallest of ways! We made a big decision to keep Parker with typical peers rather than send him to a segregated school for kids w/DS. I have had peace since we made our decision, but had a few moments of creeping doubt until school started today. His teacher has a 21 year old brother with DS, no, we had NO idea!! She made the point to mention that Parker would not be treated any differently than the "typical" kids, what a relief! The Spanish teacher at preschool also has a son with DS, funny, in the years we've spent at the school that never came up. God truly orchestrates things long before our knowledge. We are overdue for an update on things, but I'm running late today, so pictures will have to suffice. Full disclosure here, these pictures are from the end of school day, as you can see Parker is a typical boy, a "dirt magnet," but such a cute one if I say so myself! Love to all!<br />
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mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com1tag:blogger.com,1999:blog-8022653569545240103.post-36761884619024163352011-08-20T14:06:00.000-07:002011-08-20T14:06:55.011-07:00DSRTF Piece - 30 Minutes if you love someone with Down syndromeDSRTF piece<br />
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If you love someone with Down syndrome, at any age, you need to watch this 30 minute interview with Dr. Bill Mobley to find out what's on the horizon with Down syndrome research. Your loved one's life could change significantly in the next few years. Remember to STOP the media player below so the music doesn't interfere...<br />
<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/hfvnAtwcwoQ?feature=player_embedded' frameborder='0'></iframe></div><br />
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<a href="http://www.youtube.com/watch?v=hfvnAtwcwoQ&feature=player_embedded"></a>mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-66852994674785384482011-08-07T07:59:00.000-07:002011-08-07T07:59:39.059-07:00TAKE ACTION! CALL/EMAIL YOUR MEMBERS OF CONGRESS TO COSPONSOR THE "21 ACT" PACKAGECALL/EMAIL YOUR MEMBERS OF CONGRESS TO COSPONSOR THE "21 ACT" PACKAGE<br />
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Take Action!<br />
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Today, Representatives and Congressional Down Syndrome Caucus Co-Chairs, Cathy McMorris Rodgers (R-WA), Chris Van Hollen (D-MD) and Pete Sessions (R-TX),introduced the Trisomy 21 Act of 2011 or “21 Acts” package (HR 2695 and HR 2696). The 21 Act package includes two important pieces of legislation, the Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695). <br />
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The 21 Research Resource Act will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.<br />
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The 21 Research Centers Act will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million to support the Centers of Excellence.<br />
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FOR MORE INFORMATION <br />
http://www.ndss.org/index.php?option=com_content&view=article&id=262&Itemid=143&limitstart=4<br />
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ACTION NEEDED<br />
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Please take a few minutes to call or email your Representative today to ask them to cosponsor 21 Act package! You can reach your Representative by calling the Capitol Switchboard at 202-224-3121. We have included both a script (below) and email/letter template to help you reach out to these offices. Please do not hesitate to contact me or Sara Weir (sweir@ndss.org) with any questions.<br />
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Regards, <br />
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Madeleine Will, Director of the Policy Center<br />
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21 Act Package - Script/Talking Points to Call Your Representative<br />
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ADVOCATE: <br />
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Hi, my name is __________. I’m a constituent from ____ (home town) ____. May I please speak to the Congressman/Congresswoman’s Legislative Assistant who handles healthcare and/or disability issues? <br />
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CONGRESSIONAL OFFICE: <br />
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Let me see if XXXX is available. May I ask what you are calling about? <br />
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ADVOCATE: <br />
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Sure, I’m an individual/parent of a child/adult with Down syndrome. I would like to discuss a bill, the 21 Act package (HR 2695/HR. 2696) that is very important to our family. <br />
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CONGRESSIONAL OFFICE HEALTHCARE / DISABILITY LEGISLATIVE ASSISTANT: <br />
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Hi, this is XXXX, how can I help you? <br />
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ADVOCATE: <br />
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Hi, this is ___ (your name) __ from ___ (home town) ____. I’m an individual/parent of a child/adult with Down syndrome. I would like to discuss two important bills that make up the 21 Act package (HR 2695/HR. 2696. I am calling to ask my Representative to cosponsor this bill led by Representatives McMorris Rodgers (R-WA), Sessions (R-TX), and Van Hollen (D-MD). <br />
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The first bill, the 21 Research Resource Act, will expand and intensify Down syndrome programs of the National Institutes of Health and the Centers for Disease Control and Prevention to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders. <br />
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The second bill, the 21 Research Centers Act, will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill also provides funding to support the Centers of Excellence.<br />
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CONGRESSIONAL OFFICE HEALTHCARE / DISABILITY LEGISLATIVE ASSISTANT:<br />
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I will let my boss know that we talked and make sure that he/she takes a look at the bill. <br />
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(Note: When you talk to the legislative staff, you are likely to get the response.) <br />
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ADVOCATE: <br />
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If your boss is interested in signing on as a cosponsor, you may contact:<br />
Kim Betz (kimberly.betz@mail.house.gov or 202-225-2006) in Representative McMorris Rodgers' office.<br />
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Thank you for your time. I hope your boss will consider cosponsoring this important package of legislation. May I get your email so that I can follow up with you on this issue? Thanks very much!<br />
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If you are not on the NDSS action alert email list and would like to receive these alerts and information bulletins, please subscribe at: http://capwiz.com/ndss/mlm/signup/mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com1tag:blogger.com,1999:blog-8022653569545240103.post-54018284521811560172011-07-30T06:52:00.000-07:002011-07-30T07:05:08.692-07:00Search for A Curethis article was in the NY Times.com, this is what we fight for, problem is, within our own community we have a "divided house." People that believe that with medication we are "changing" our kids. Here is the thing, we straighten our kids teeth with braces, we fix their heart conditions, we repair broken bones, we treat diabetes, we take allergy medications for allergies, don't we want the best for our kids and ourselves? Take the time to read and comment, with new non-invasive testing becoming available as soon as the next year potentially. This research field for DS may dry up because kids like Parker will have an even smaller chance of being born. Leaving my precious son and others without the chance of living improved, independent lives.<br /><br />Thanks Dr. Costa and others for you dedication and continued pursuit! <br /><br />"July 29, 2011<br />A Drug for Down SyndromeBy DAN HURLEY<br />Correction Appended<br /><br /><br />Early in the evening of June 25, 1995, hours after the birth of his first and only child, the course of Dr. Alberto Costa’s life and work took an abrupt turn. Still recovering from a traumatic delivery that required an emergency Caesarean section, Costa’s wife, Daisy, lay in bed, groggy from sedation. Into their dimly lighted room at Methodist Hospital in Houston walked the clinical geneticist. He took Costa aside to deliver some unfortunate news. The baby girl, he said, appeared to have Down syndrome, the most common genetic cause of cognitive disabilities, or what used to be called “mental retardation.” <br /><br />Costa, himself a physician and neuroscientist, had only a basic knowledge of Down syndrome. Yet there in the hospital room, he debated the diagnosis with the geneticist. The baby’s heart did not have any of the defects often associated with Down syndrome, he argued, and her head circumference was normal. She just didn’t look like a typical Down syndrome baby. And after all, it would take a couple weeks before a definitive examination would show whether she had been born with three copies of all or most of the genes on the 21st chromosome, instead of the usual two. <br /><br />Costa had dreamed that a child of his might grow up to become a mathematician. He had even prevailed upon Daisy to name their daughter Tyche, after the Greek goddess of fortune or chance, and in honor of the Renaissance astronomer Tycho Brahe. Now he asked the geneticist what the chances were that Tyche (pronounced Tishy) really had Down syndrome. <br /><br />“In my experience,” he said, “close to a hundred percent.” <br /><br />Costa and his wife had been trying to have a baby for a couple of years. Daisy’s first pregnancy ended in a miscarriage, which they knew can occur because of a genetic disorder in the fetus. When Daisy became pregnant a second time, Costa insisted they get a chorionic villus sampling, an invasive prenatal genetic test. But the procedure caused a miscarriage. (The test showed that the fetus was genetically normal.) Costa vowed that if there was a third pregnancy — this one — they would conduct no prenatal tests. <br /><br />Now, with Tyche bundled peacefully in a bassinet at the foot of Daisy’s bed, and Daisy asleep, Costa sat up through most of the night crying. He had gone into the research side of medicine in part to avoid scenes like this — parents devastated by a diagnosis. But by morning, he found himself doing what any father of a newborn might: hovering by the crib, holding his daughter’s hand and marveling at her beauty. <br /><br />“From that day, we bonded immediately,” he told me during one of our many talks over the last year. “All I could think is, She’s my baby, she’s a lovely girl and what can I do to help her? Obviously I was a physician and a neuroscientist who studies the brain. Here was this new life in front of me and holding my finger and looking straight in my eyes. How could I not think in terms of helping that kid?” <br /><br />With no experience in the study of Down syndrome, Costa took a short walk the next day to a library affiliated with Baylor College of Medicine, where he worked as a research associate in neuroscience. Reading the latest studies, he learned that the prognosis was not nearly as dire as it was once considered. Life expectancies had grown, education reforms had produced marked gains in functioning and — of particular interest to Costa — a mouse model of the disorder had recently been developed, opening the door to experimentation. He soon made a decision: he would devote himself to the study of Down syndrome. <br /><br />In 2006, using mice with the equivalent of Down syndrome, Costa published one of the first studies ever to show that a drug could normalize the growth and survival of new brain cells in the hippocampus, a structure deep within the brain that is essential for memory and spatial navigation. In people with Down syndrome, the slower pace of neuron growth in the hippocampus is suspected to play a key role in cognitive deficits. Follow-up studies by other researchers reached conflicting results as to whether the drug Costa had tested, the antidepressant Prozac, could produce practical gains on learning tests to match its ability to boost brain-cell growth. Undeterred, Costa moved on to another treatment strategy. In 2007 he published a study that showed that giving mice with Down syndrome the Alzheimer’s drug memantine could improve their memory. <br /><br />Now Costa has taken the next step: he is completing the first randomized clinical trial ever to take a drug that worked in mice with Down and apply it to humans with the disease, a milestone in the history of Down-syndrome research. <br /><br />“This was a disorder for which it was believed there was no hope, no treatment, and people thought, Why waste your time?” says Craig C. Garner, a professor of psychiatry and behavioral sciences and co-director of the Center for Research and Treatment of Down Syndrome at Stanford University. “The last 10 years have seen a revolution in neuroscience, so that we now realize that the brain is amazingly plastic, very flexible, and systems can be repaired.” <br /><br />But the effects of that revolution on Down research may yet be cut short. A competing set of scientists are on the cusp of achieving an entirely different kind of medical response to Down syndrome: rather than treat it, they promise to prevent it. They have developed noninvasive, prenatal blood tests which would allow for routine testing for Down syndrome in the first trimester of a pregnancy, raising the specter that many more parents would terminate an affected pregnancy. Some predict that one of the new tests could be available to the public within the year. <br /><br />Costa, like others working on drug treatments, fears that the imminent approval of those tests might undercut support for treatment research, and even raises the possibility that children like Tyche will be among the last of a generation to be born with Down syndrome. <br /><br />“It’s like we’re in a race against the people who are promoting those early screening methods,” Costa, who is 48, told me. “These tests are going to be quite accessible. At that point, one would expect a precipitous drop in the rate of birth of children with Down syndrome. If we’re not quick enough to offer alternatives, this field might collapse.” <br /><br />So recently was the genetic cause of Down syndrome established that just this past March, Costa actually met the widow of the French scientist, Jérôme Lejeune, who made the discovery in 1959. The scene of their meeting was a Paris conference, named in honor of Lejeune, where neuroscientists from around the world discussed progress into treatments for Down and related diseases. Such a conference would have been inconceivable when Costa entered the field 15 years ago. <br /><br />“If you think about most genetic diseases, they’re usually caused by one gene, and in fact one mutation at one amino acid,” says Roger Reeves, a professor at the Institute for Genetic Medicine at the Johns Hopkins University School of Medicine. “But with Down syndrome, you have an extra copy of all 500 or so genes on Chromosome 21.” In the first two decades after Lejeune’s discovery, the very idea of grappling with those hundreds of triplicated genes scared off scientists from any serious effort to find a treatment for what they were soon calling “trisomy 21.” It just seemed impossibly complex. “The turning point,” Reeves says, “came when Muriel Davisson made her mouse.” <br /><br />Davisson, now semiretired from Jackson Laboratory in Bar Harbor, Me., spent the 1980s developing a mouse, known as Ts65Dn, that had many of the traits associated with Down syndrome, including, incredibly, the distinctive facial characteristics associated with the disease and the same slightly uncoordinated gait. <br /><br />Five years after publishing news of her mouse, Davisson received an e-mail from a young neuroscientist named Alberto Costa. Her work, he told her, opened the door for him to conduct meaningful new drug research. <br /><br />“It was an epiphany, that, oh, this is a field where I can apply a lot that I’ve learned,” Costa says. “Science is usually unforgiving with people who try to change career paths, but it was a risk I was willing to take.” Having earned his Ph.D. studying the electrical and chemical basis of communication between brain cells, “I figured, O.K., if there is something that can be done in this field, it’s going to be done at that level of neuronal electrophysiology.” After months of reading the latest studies, Costa knew he needed Davisson’s mice. <br /><br />“He twisted my arm till I took him into my lab,” Davisson says with a laugh. “I didn’t have funding. He wrote a grant to get the funding. He is very enthusiastic.” She also found out that he was a “perfectionist, and not very tolerant of people who aren’t perfectionists. He doesn’t do experiments without being sure he’s doing them right. When he makes a finding, you know that it’s real.” <br /><br />Using Davisson’s mice, Costa’s 2006 study with Prozac produced cellular changes in the brain. In 2007, Craig Garner at Stanford took the next step, reporting behavioral improvements in Ts65Dn mice after weeks of drug treatment. (Earlier this year, a company he co-founded to pursue that strategy received funding from a venture-capital firm.) Four months later, Costa published his memantine study, showing that a single injection of the drug produced behavioral benefits within minutes, enabling Down-equivalent mice to learn as well as standard mice. <br /><br />Memantine works, Costa hypothesizes, not by boosting the growth of brain cells but by normalizing how existing cells use the neurotransmitter glutamate. Because people with Down syndrome have three copies of all or most of the genes on Chromosome 21 instead of just two, they have about 50 percent more of any proteins encoded in that chromosome. One result, Costa has shown, is that the NMDA receptors of Ts65Dn mice are “hyperactive” — they overreact to stimuli. By responding to too many things, they learn too little; the signal is lost amid the noise. But giving memantine to quiet the noisy NMDA receptors, Costa has found, makes the brain cells react almost normally. <br /><br />Other drugs that work on different systems in the brain have also shown benefits in the Ts65Dn mouse. In 2009, Dr. William C. Mobley, chairman of neurosciences at the University of California, San Diego, and one of the most active and visible researchers in the field, co-wrote a study showing that a combination of drugs designed to raise norepinephrine levels in the brain normalized the mice’s learning abilities. Most recently, last year the Nobel laureate Paul Greengard of Rockefeller University showed that memory and learning could be normalized in Ts65Dn mice by lowering levels of beta amyloid, the protein goop that has long been known to clog the brains of people with Alzheimer’s disease. <br /><br />“There’s been a sea change in our ability to understand and treat Down syndrome,” Mobley says. “There’s just been an explosion of information. As recently as the year 2000, no drug company would possibly have thought about developing therapies for Down syndrome. I am now in contact with no less than four companies that are pursuing treatments.” <br /><br />Costa’s current memantine study began by testing memory and spatial learning in 40 young adults with Down syndrome. Daily, for 16 weeks, half received memantine pills, the other half a placebo. This fall, Costa will present preliminary results at a scientific meeting in Illinois on whether taking the drug made those with Down, in a word, smarter. <br /><br />A half-hour from his office and laboratory at the University of Colorado-Denver School of Medicine, where he is an associate professor of medicine and neuroscience, Costa pulled into a parking space in front of his modest two-bedroom apartment. The figure of a girl in green dashed toward the car — and then vanished. <br /><br />“Tyche,” Costa called to his daughter, “where’d you go?” <br /><br />We both stepped out to look for her. I found her standing in front of another car, a Subaru Forester, waiting to get in. Dressed in a lime-colored shirt and skirt, the bangs of her mahogany hair framed by a hair band, Tyche stood just 4 feet 6 inches tall, with a round face, broad nose and heavy-lidded eyes. <br /><br />Seeing my puzzled look, Costa explained that they also owned the Subaru — which he usually drove with Tyche. He led her to the Toyota we’d arrived in, where she sat down in the back seat. As Costa drove us to his office, I asked what she thought of her father’s work. <br /><br />“He’s the greatest scientist,” she said, in a slurred, high-pitched voice. Then she added with a laugh, “And he builds evil machines.” <br /><br />“That’s from watching too many cartoons,” Costa said. “Her favorite is ‘Phineas and Ferb.’ Of course, there’s an evil scientist in it who builds all kinds of machines.” <br /><br />“Like the Smell-inator,” added Tyche, who turned 16 in June. <br /><br />Back at Costa’s office, Tyche demonstrated to me what people with Down can be capable of even without medication. (Because she’s not an adult, Tyche is ineligible to participate in her father’s study.) On the whiteboard at the front of the room, Costa wrote out an algebra problem for her to solve: 8x2 - 7 = 505. <br /><br />“She’s one of only two people with Down syndrome who I’ve ever known to be capable of doing algebra,” Costa said. “Normally we give her a problem before she goes to bed.” As she solved the equation, taking six steps to conclude that X equals 8, he said, “It’s basically instead of a bedtime story.” This past Christmas, he proudly noted, he gave her the Rosetta Stone language program for learning Portuguese, and by March she had finished with Level 1 and begun Level 2. <br /><br />It turns out that with vigorous education and support, many people with Down do far better than once thought possible. Medical care of heart and other physical ailments associated with the disorder have likewise achieved significant benefits, doubling the average lifespan from 25 to 49, in just the 14 years between 1983 and 1997. <br /><br />Still, with an I.Q. that is typically around 50 points lower than average — with some far lower and others, like Tyche, reaching higher — something more than education alone would be necessary to enable the majority of people with Down syndrome to live independently. Costa said he hopes that memantine might be that something, raising I.Q. noticeably, even if modestly. For him, the goal is to help people with Down syndrome achieve autonomy. “At some point, you want your children to have their own life,” he said. “It’s about independence.” <br /><br />Costa was raised in Brazil, the son of a marine officer and a seamstress. When he was 14, his parents divorced. His father sent little support, and he and his two siblings lived with their mother in poverty. Perhaps inevitably for someone who had to struggle to rise above his circumstances, he comes across as intense and consumed by his work; he hasn’t taken a vacation since Tyche was 3. But he is also devoted to his daughter and wife, spending most of every weekend with them. <br /><br />“She’s a great kid,” he said. “She has a very strong personality. In many ways she has features of a regular teenager. She doesn’t like me to get into her bedroom. She loves pop music and vampires.” Her relatively high functioning, he told me, is important to him. “If Tyche were really severely affected, I don’t know if I would have had the energy to go on with this business.” Then again, he admits to having paternal feelings toward all 40 young adults in his study, whose cognitive abilities vary widely. “At the end of the day,” he said, “their parents know someone really cares for their kid. It’s not an academic experience for me. It’s my life.” <br /><br />In January, and again in March, a spate of news reports described new studies of the noninvasive blood tests that would allow pregnant women to check for Down syndrome without the risks and discomfort associated with chorionic villus sampling and amniocentesis. Few of the articles, however, took note of the profound unease many medical ethicists, including some who are ardently pro-choice, feel about the tests and how they might lead to a dramatic reduction in the Down syndrome population. <br /><br />“Even people who are traditionally against abortion are sometimes willing to condone it when the abortion is of a fetus with a disabling trait,” says Erik Parens, a bioethicist at the Hastings Center in Garrison, N.Y. “But it’s important to recognize that there is a huge range of genetic disorders. In their own way, a lot of kids with Down syndrome flourish, and so do their families.” <br /><br />Advocates of the new tests insist that parents will be given news of an affected pregnancy by a trained geneticist who will present the information fairly and fully. Critics, including Costa and many other parents of children with Down syndrome, say that such dispassionate approaches rarely happen in practice, with many obstetricians and genetic counselors providing unduly negative or misleading information. <br /><br />But Stephen Quake, a professor of bioengineering and applied physics at Stanford and a developer of one of the new tests, says: “It’s a gross oversimplification to assume that these tests are going to lead to the wholesale elimination of Down-syndrome births. My wife’s cousin has Down syndrome. We just celebrated his 21st birthday. He’s a wonderful person. It’s not an obvious step that you would terminate an affected pregnancy.” <br /><br />But Costa points to a falloff in the financing of Down-syndrome research since the prenatal tests have been in development. Although it’s difficult to compare the numbers, money from the National Institutes of Health dropped to $16 million in 2007 from $23 million in 2003, before creeping back up to $22 million in 2011. That’s far less than the $68 million slated for cystic fibrosis, which affects an estimated 30,000 people in the United States, at most one-tenth of the 300,000 to 400,000 people who have Down. <br /><br />“The geneticists expect Down syndrome to disappear,” Costa says, “so why fund treatments?” <br /><br />Alan Guttmacher, director of the National Institute of Child Health and Human Development, denies that this is the calculus used by his organization. Yet he offered no clear answer when I asked him why about $3,000 in research dollars is spent by N.I.H. for every person with cystic fibrosis, compared with less than $100 for every person with Down. <br /><br />“The number affected is a fair metric to use,” Guttmacher said. But, he pointed out, most of N.I.H.’s funding decisions are based on the strength of proposals coming from researchers. Advocacy groups for disorders like AIDS, autism and breast cancer have certainly played a role in their gaining increased funding, he said. And perhaps, he speculated, Down suffers from an image problem. “Part of it is that Down syndrome has been around for so long,” he said. <br /><br />Representative Cathy McMorris-Rodgers, Republican of Washington, who co-founded the Congressional Down Syndrome Caucus soon after her 4-year-old son, Cole, was born with the disorder, has had little success in having money appropriated for Down research. <br /><br />“I find myself wondering how N.I.H. really sets their priorities,” she told me. “I’m quite concerned that so many of the researchers in the Down-syndrome field have difficulty getting funded.” She continued, “My fear is that for some, they believe that it’s been taken care of through prenatal diagnosis.” <br /><br />Even Costa has struggled to secure financing. He lives with Tyche and Daisy in a rented apartment, having never felt he had enough job security to buy a home. At his laboratory, some of his most expensive and sophisticated equipment for studying Down syndrome remains in storage, literally gathering dust for want of financing to use it. One source of his research money has been the Anna and John J. Sie Foundation, based nearby in Denver, and run by Michelle Sie Whitten, whose 8-year-old daughter has Down syndrome. Three years ago, the foundation established a research institute at the University of Colorado in Denver, where Costa works. <br /><br />Plainly, though, he didn’t get into Down-syndrome research for the money. “There’s a reason why I’m doing what I’m doing,” he told me, nodding toward Tyche. <br /><br />Not all parents of children with Down syndrome embrace Costa’s vision of a medical treatment targeting intelligence. In a recent survey conducted in Canada, parents were asked what they would do if there was a “cure” for their child’s Down syndrome. A surprising 27 percent said they would definitely not use it, and another 32 percent said they were unsure. <br /><br />Meanwhile, the major not-for-profit advocacy groups devoted to Down syndrome spend little on research, instead preferring to lobby and offer parental support. Fresh energy has come from two relatively new groups determined to turn the situation around — Research Down Syndrome and the Down Syndrome Research and Treatment Foundation — but even they have so far succeeded in each raising only about $1 million a year, a fraction of the annual research budgets of many other disease-advocacy groups. <br /><br />Behind the ambivalence toward treatments, some parents say, is a fear that increasing their children’s intelligence might change their personalities — their very identities. <br /><br />“Nobody would be against giving insulin for diabetes,” said Michael Bérubé, director of the Institute for the Arts and Humanities at Pennsylvania State University and author of the 1996 book “Life as We Know It,” published five years after his second son, Jamie, was born with the disorder. “But Down syndrome isn’t diabetes or smallpox or cholera. It’s milder and more variable and more complicated. I’d be very leery of messing with the attributes Jamie has. He’s pretty fabulous. At the same time, I’m not doctrinaire. If you’re talking about a medication that allows people to function in society and hold jobs, how can you be against that?” <br /><br />The parents I met whose children participated in Costa’s study expressed little of Bérubé’s ambivalence. Peggy Hinkle told me about changes she saw in her 26-year-old daughter. “When Christina was on the pills, she told me one morning about a dream she had. She gave me five full, complete sentences. Which is a very big deal. Not only that, she left the room and came back later and told me another sentence about the dream. And she started to do Jumble word puzzles in the newspaper. I don’t know if she was on the drug or on placebo, but after five weeks there was a change. Boom. That’s why we participated: to expand her horizons.” <br /><br />For his part, Costa has no doubts about the work to which he has devoted the last 15 years of his life. “If you have a disorder that’s changing the function of an organ, which in this case is the brain, and you use a medication to bring the function of that organ closer to where it was meant to be from millions of years of evolution, that’s as fair as treating any other disease,” he said. “I don’t see it as any different.” If his current study is successful, Costa’s ultimate goal is to test it in youths, like Tyche, during the crucial early years of development. Costa is quick to point out that he has not offered her memantine outside the study, and he discourages other physicians from doing so until its safety and effectiveness is proved. But from his perspective as both a researcher and a father, he said: “The sooner you start, obviously, the greater would be your hopes. All I know is, the clock is ticking.” <br /><br />Dan Hurley (hurleydan1@gmail.com) is the author of "Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It."<br /><br />Editor: Ilena Silverman (i.silverman-MagGroup@nytimes.com)<br /><br />Correction: July 30, 2011<br /><br /><br />An article on Page 28 this weekend about Dr. Alberto Costa’s search for a drug that could help Down syndrome patients misidentifies a neurotransmitter that Dr. Costa says is affected by the drug memantine. It is glutamate, not NMDA. The article also misstates, in one instance, Dr. Costa’s surname as Castro.<br /><br /><br /><br /><a href="http://www.nytimes.com/2011/07/31/magazine/a-fathers-search-for-a-drug-for-down-syndrome.html?_r=2&pagewanted=all"></a>mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com1tag:blogger.com,1999:blog-8022653569545240103.post-753143115940492002011-07-20T05:17:00.000-07:002011-07-20T05:45:26.495-07:00One Year Ago Today..<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqjN-Rs703agAQMsOR3DsvWNk3pZ-4DYn7Fbu_1QE9aOkYSKJaHfr-J_j3C8316hoIDbFnW78uRFUl65dKin94u_kNNDo_rPSzXWh57bs0fHrSvUKyn2QFZYpFlNcS_Z1BcG1-x8MQOUEC/s1600/006.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqjN-Rs703agAQMsOR3DsvWNk3pZ-4DYn7Fbu_1QE9aOkYSKJaHfr-J_j3C8316hoIDbFnW78uRFUl65dKin94u_kNNDo_rPSzXWh57bs0fHrSvUKyn2QFZYpFlNcS_Z1BcG1-x8MQOUEC/s320/006.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5631414460465325522" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO9z7iHorIf16INlX2kAXVbmPGchm897unqmrliU9p8yq2mPkDvZv2stDhB72A1YQ12nnS1oGyhtORVLumrvT-ppPOfS35N6XOcDctuW6ateZux_yovohJiXK2Q7HYejZO7Stnx6AQr3kI/s1600/pheart1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO9z7iHorIf16INlX2kAXVbmPGchm897unqmrliU9p8yq2mPkDvZv2stDhB72A1YQ12nnS1oGyhtORVLumrvT-ppPOfS35N6XOcDctuW6ateZux_yovohJiXK2Q7HYejZO7Stnx6AQr3kI/s320/pheart1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5631414453198716322" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9nhpeZLVUcP55U8peuHG0UrMZriTiatBjgjYrPEvab-2ic5o-CeFVaieizbM_v850aH7M6gESQpcUxIG9ZHXozsPrAKhOYg_jiMuj7HESESGyuG-63dTbwACaR0pcKPOpuybk9VzSts7g/s1600/pheart2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9nhpeZLVUcP55U8peuHG0UrMZriTiatBjgjYrPEvab-2ic5o-CeFVaieizbM_v850aH7M6gESQpcUxIG9ZHXozsPrAKhOYg_jiMuj7HESESGyuG-63dTbwACaR0pcKPOpuybk9VzSts7g/s320/pheart2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5631414449278857218" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM_dhi0g14eCuJncWc-hejBi2hcdS6PyV8oI8xoVp_ctEx0bD3vGdpmj9VLrpvaAffTssIIxP8Em_PaSeBGoiB2vYnHiKVP2aQZbLvGIsVhQqKrUpmlslvA2Feox0b3kQ1FwZO-LwKr1Lh/s1600/momparker.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM_dhi0g14eCuJncWc-hejBi2hcdS6PyV8oI8xoVp_ctEx0bD3vGdpmj9VLrpvaAffTssIIxP8Em_PaSeBGoiB2vYnHiKVP2aQZbLvGIsVhQqKrUpmlslvA2Feox0b3kQ1FwZO-LwKr1Lh/s320/momparker.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5631414443760182770" /></a><br />at this time last year we had handed our precious baby boy over to the surgeon at TCH for heart surgery. We were huddled as a family in the family center at TCH. The support of family and friends in that room was apparent and I am truly grateful. I must admit somedays it seems like years ago, other days it is hard to believe a year has past. Parker has accomplished so much in the last year, he is a different boy than he was last year. He's walking (running), talking, and getting into all kinds of typical 2 yr old trouble. I don't reflect often on the surgery aside from touching his scar and praising God for His goodness. I don't let my mind wander when I hear about families that were not as blessed as we were during surgery. I don't spend time dwelling on "what if he needs another surgery" after talking to other friends who find out their kids need more OHS later in life unexpectedly either. A dear friend is in the hospital in critical care ICU faced with the possibility of a heart transplant so this last week I have thought of Parker's surgery more than usual. Her arrival to the hospital was totally unexpected, the result of a massive heart attack. It reminds me that none of our days are promised, God is the only one that knows what lies ahead. He expects us to remember that this is not our home, that our home is in heaven and we should not measure by the world's standards. I must admit our summer has been busier than ever and many days I find myself forgetting just this. Today, please join me in celebrating God's goodness, His favor on our family, and our precious son Parker who gives us such great joy!! To God be the glory!<br /><br />Phillipians 1:9<br />"And this is my prayer; that your love may abound more and more in knowledge and depth of insight, so that you may be able to discern what is best and may be pure and blameless until the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ - to the glory and praise of God."mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com1tag:blogger.com,1999:blog-8022653569545240103.post-62662954195521324832011-07-01T06:15:00.001-07:002011-07-01T06:38:37.196-07:00Summer!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHpzuAZ56ZGEgzXg6BfKWIV-u0YlwTOhGBX9C1SPnRmgA3O9gCwLRHB2Lv731Bdi_ViOZKlQUF3-sWGij5IXDANQ6co3AJER3Q87gde92nn6wbqp_Q77pj6fjc_DPglaVNMmXKA0UJi2f5/s1600/pbaseball.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHpzuAZ56ZGEgzXg6BfKWIV-u0YlwTOhGBX9C1SPnRmgA3O9gCwLRHB2Lv731Bdi_ViOZKlQUF3-sWGij5IXDANQ6co3AJER3Q87gde92nn6wbqp_Q77pj6fjc_DPglaVNMmXKA0UJi2f5/s320/pbaseball.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5624377517505379026" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitMQ6IQ0z9swRFaAXcX115zgaHaalEdAYtgdGnAyKjzetlJo_QU_Z5PmWx0_hZo3_8T3_jHut5PtSxRMwiFkCKs8kJtFoSsPyrIPstiYiokKNyrRn0UPaxQr1dFGCfEeWVB4103HsFKhdn/s1600/mall.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitMQ6IQ0z9swRFaAXcX115zgaHaalEdAYtgdGnAyKjzetlJo_QU_Z5PmWx0_hZo3_8T3_jHut5PtSxRMwiFkCKs8kJtFoSsPyrIPstiYiokKNyrRn0UPaxQr1dFGCfEeWVB4103HsFKhdn/s320/mall.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5624377511144491250" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij178hvpsmiZf-B6nz8__vbT0SxqVLaqjPPQfRcal1oxRQqYjhEMIRJzaW7cHeNvGtFqsAsKm5yOlJ1qVDe0LKnqwRp7iicHHFikAn9KnJR4jFkLlhN5RkH9hAf59CZVJ7gP1Xf3-xi4Un/s1600/maddiepink.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij178hvpsmiZf-B6nz8__vbT0SxqVLaqjPPQfRcal1oxRQqYjhEMIRJzaW7cHeNvGtFqsAsKm5yOlJ1qVDe0LKnqwRp7iicHHFikAn9KnJR4jFkLlhN5RkH9hAf59CZVJ7gP1Xf3-xi4Un/s320/maddiepink.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5624377507653743218" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL3AcPhErevlrcJHe0ySMlZAEPtPqSlPNSGY4Jssj00RLJ178DQe-sSrT_yh7dtDpqkIQAnoO0Gb_sIwXgMF2qcAfUU5hYzJsO466gmOnXfgaJFA_diAX9r8HsRKtj0koh5MlW0_a3VWOH/s1600/glove.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL3AcPhErevlrcJHe0ySMlZAEPtPqSlPNSGY4Jssj00RLJ178DQe-sSrT_yh7dtDpqkIQAnoO0Gb_sIwXgMF2qcAfUU5hYzJsO466gmOnXfgaJFA_diAX9r8HsRKtj0koh5MlW0_a3VWOH/s320/glove.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5624376993674856434" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghX3YDovJBP8EepMEQEm_8x-hnRCEN85SiGL7ViVMd1vC495OreyUsj0RffdmZqc2XCe_PRRGVz2zbCKVEiocpqLiszh1uQvVeVHV5SrxP2xhjD3R2D6i7DWBzwbo4sLJAOqtZx06JhCOH/s1600/ftbend4.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghX3YDovJBP8EepMEQEm_8x-hnRCEN85SiGL7ViVMd1vC495OreyUsj0RffdmZqc2XCe_PRRGVz2zbCKVEiocpqLiszh1uQvVeVHV5SrxP2xhjD3R2D6i7DWBzwbo4sLJAOqtZx06JhCOH/s320/ftbend4.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5624376985822740690" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1a-5tysj09EcS-3i03iXN1YP5Sf-G6_UwdHCKDXLufBZdHdWMxzrIBEKQP8wK4kP0cLYQHaYDcAYFprsun6UdQ1FUhtqdcG2Zv1K3bA8CRwXe0BdcD6GnF0zkyKhbwF09bbZDKHOxGPLx/s1600/boysdad.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1a-5tysj09EcS-3i03iXN1YP5Sf-G6_UwdHCKDXLufBZdHdWMxzrIBEKQP8wK4kP0cLYQHaYDcAYFprsun6UdQ1FUhtqdcG2Zv1K3bA8CRwXe0BdcD6GnF0zkyKhbwF09bbZDKHOxGPLx/s320/boysdad.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5624376979997403842" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC28NiiLpnkELZcR5P1XkYYWWJKuc1CWde19duyFgDJvAul6WpfrFHtHCkr_3ITDSwcNbReCVm1k7ht4R1wn0DrnKHcAj4kHldqhMWEjDb4AUbQw97TrYVj_QJqNFhhqZzf_1THGJDs4Xq/s1600/boysbb.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC28NiiLpnkELZcR5P1XkYYWWJKuc1CWde19duyFgDJvAul6WpfrFHtHCkr_3ITDSwcNbReCVm1k7ht4R1wn0DrnKHcAj4kHldqhMWEjDb4AUbQw97TrYVj_QJqNFhhqZzf_1THGJDs4Xq/s320/boysbb.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5624376977868159042" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJr_gUHhYKaEh04-urGHnGN5VaSruH3ww2V3TuJ08ipwqV8bVFirDCODIKSCAQUWlXPmjUt70OfI5gt5PyrfxtiCOzYomqk0VkG9IG4uhsWao31hrptKCFygrCeEeKZ8NQgVUH1RH5TCgF/s1600/base.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJr_gUHhYKaEh04-urGHnGN5VaSruH3ww2V3TuJ08ipwqV8bVFirDCODIKSCAQUWlXPmjUt70OfI5gt5PyrfxtiCOzYomqk0VkG9IG4uhsWao31hrptKCFygrCeEeKZ8NQgVUH1RH5TCgF/s320/base.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5624376976046291122" /></a><br />We continue to live life in the "fast lane," summer is supposed to be for lazy days...not so much around our house, we have been busier than ever! Thought I'd post some of the events over the last few weeks. Most of you remember we spend the summers playing baseball, last year the boys went all the way to State. Last night we won the first stage, District! Madeline has been busy with gymnastics, swimming, and theater. She was Miss Hannigan in Annie and earned herself a role as a Munchkin in the big production in the Wizard of Oz coming up in August. She loves to sing and she may have found a new passion! Mallory has been busy with gymnastics, swimming and girl scout camp. She is looking forward to her first sleep away camp with church in a few weeks. Both girls went to Vacation Bible School too. Parker and I have been busy with the typical therapy and Drs appointments, we just came back from Chicago Monday night after seeing his endocrinologist. Good news, Dr was pleased with impressed with his "skills" couldn't believe how well he was getting around (and getting into everything) and his verbal skills. He got bonus points for growing 1 1/4 inches since January and gaining a pound. He's now 32 1/4 inches and 23 lbs. We did a 4 hour growth hormone test and will have the results in about 10 days. We head back to Dallas on the 13th for his neurodevelopmental eval. Putting lots of miles on my car these days! Strangely this busyness feels like we are back to "normal" life. Days come when it seems overwhelming (and I'm still threatening to move to the country), but we have a great full life and we are blessed!<br /><br />Can you tell who loves baseball? he's got quite the throwing arm too!mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com1tag:blogger.com,1999:blog-8022653569545240103.post-57913835962745817142011-06-22T14:20:00.001-07:002011-06-22T14:38:19.255-07:00Ds and Alzheimers<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg7zQO7z8OlZxLBOZ8rPmZ1KcRaj49HA7QDMLcYuGF0j60-gz3nVEDZTzmeVzCl6nlNUoLZ2ud2qmpWGR-Qu-4SoogFO_rA9tKJ0RbRNTwnsjw4JMT8YtsaVK-WkERzdXw5bVwVX6mXHRa/s1600/004.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5621160129555207106" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg7zQO7z8OlZxLBOZ8rPmZ1KcRaj49HA7QDMLcYuGF0j60-gz3nVEDZTzmeVzCl6nlNUoLZ2ud2qmpWGR-Qu-4SoogFO_rA9tKJ0RbRNTwnsjw4JMT8YtsaVK-WkERzdXw5bVwVX6mXHRa/s320/004.JPG" /></a>
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<br /><div>For the most part this blog is a personal journey...I try not to hit the more "difficult" moments too hard, but this video came thru and it needs to be posted. I spent last week at a fundraiser for Ds, met the top researchers in the field and we talked about new and promising clinical trials that are on the CUSP of funding. Here is the reality folks, many parents do not know that the chemistry of their child's brain is accumulating ameloid plaques at an alarming rate and they are predisposed to Alzheimer's at a MUCH younger age. While I know this isn't what many parents want to hear about their precious baby, you need to watch this video and be educated. You need to get involved and more importantly we as parent groups NEED to be action oriented to supporting these trials and efforts post-haste. As a community we tend to be silent and not ask for trials, please be informed and get involved. For those of you that read this blog because you are friends and family, know that this research is equally as important for the general population. What you may or may not know is this Alzheimer's research effects the general population as well. Every penny counts. Look at my baby's face, don't let him be one of the statistics. <a href="http://www.researchds.org/">http://www.researchds.org/</a> and <a href="http://dsrtf.org/">http://dsrtf.org/</a>
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<br />mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-56046486233277747322011-06-05T13:43:00.000-07:002011-06-05T14:00:36.150-07:00Funny Faces..<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJNQ-IAvsuyFkjcO0ZIUH6tq6R5cEY2O5cbxqkZ2OOaWYDfyEA2hMXXRKFeTC9ehoVJrrLVwjIcCkx2uAwiFp81ck2HpS7Gwo61R_glczjZwTZ07AGvUz67a3xpxC9IbwXDY8MYdrlr0_v/s1600/facedance.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJNQ-IAvsuyFkjcO0ZIUH6tq6R5cEY2O5cbxqkZ2OOaWYDfyEA2hMXXRKFeTC9ehoVJrrLVwjIcCkx2uAwiFp81ck2HpS7Gwo61R_glczjZwTZ07AGvUz67a3xpxC9IbwXDY8MYdrlr0_v/s320/facedance.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5614843274296897554" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaMnwTQgIcokPyQNUBT7eBv4yOY5tewevDbeOlEh8pt-0kNeZJIncT0mHaGBuja6uJGGYBqEuoFjEcL5sAPvA8be8SgAnaz20NGVGRnsFf6ee2LMOdfJSNQj0PrdwC-VK7RxaoF93oHsLO/s1600/face.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaMnwTQgIcokPyQNUBT7eBv4yOY5tewevDbeOlEh8pt-0kNeZJIncT0mHaGBuja6uJGGYBqEuoFjEcL5sAPvA8be8SgAnaz20NGVGRnsFf6ee2LMOdfJSNQj0PrdwC-VK7RxaoF93oHsLO/s320/face.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5614843271016912370" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDISKpSMIWGjzPIVcwexfq214OakPon4gVuoXze1K4N170kRca-KekE2I14oUMVWecmozIfj-vxszmpEnn6cd2hBk88QzIQaaBnh8tOdvSSD3YG1iY1zUsrPb8Zsv63hJEBIu_y2QcRaGz/s1600/facecup.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDISKpSMIWGjzPIVcwexfq214OakPon4gVuoXze1K4N170kRca-KekE2I14oUMVWecmozIfj-vxszmpEnn6cd2hBk88QzIQaaBnh8tOdvSSD3YG1iY1zUsrPb8Zsv63hJEBIu_y2QcRaGz/s320/facecup.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5614843264706085634" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJUD3zQM16QFVUHxJaQjWQRnL2e19o0wYdg9vnMj4dWQKXfTx_1Ufjis40LuMbOp3niZBcQKvGnqKcFx_2fwnxgXyc4tfB3m3ESs2wSiHKVTGF6mfvYszzNkSFwstrjWL19yBxaUhpZYkY/s1600/facesneak.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJUD3zQM16QFVUHxJaQjWQRnL2e19o0wYdg9vnMj4dWQKXfTx_1Ufjis40LuMbOp3niZBcQKvGnqKcFx_2fwnxgXyc4tfB3m3ESs2wSiHKVTGF6mfvYszzNkSFwstrjWL19yBxaUhpZYkY/s320/facesneak.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5614842835370786690" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUgt2L0ITn3bh-aCnZXbCeaFulnJTs7ztfDjhYdtK41KlJ2sh8JNBq-SSGDAXadcTZ3O9Z54moXLvKLS9DPJAgZGUEWEoRCwhEctByFCsSuN3yOjeoMNyuQhJHxapg_zOZOiFYnxC3utii/s1600/face1gap.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUgt2L0ITn3bh-aCnZXbCeaFulnJTs7ztfDjhYdtK41KlJ2sh8JNBq-SSGDAXadcTZ3O9Z54moXLvKLS9DPJAgZGUEWEoRCwhEctByFCsSuN3yOjeoMNyuQhJHxapg_zOZOiFYnxC3utii/s320/face1gap.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5614842828385996386" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCzCy-7ZFzv7Sb0iz6dqJIcf4E7tqurYZ5EXYQuW_dPLtQ2IkOelXlRXKqvrHrHGcwkh2QneR7RSLBgObfZpFPNmBLiYKfYkfbt-1vqI1jfUAal5HjPzAy7kCbIcxn14G7Do1zdeslDGt8/s1600/face2gap.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCzCy-7ZFzv7Sb0iz6dqJIcf4E7tqurYZ5EXYQuW_dPLtQ2IkOelXlRXKqvrHrHGcwkh2QneR7RSLBgObfZpFPNmBLiYKfYkfbt-1vqI1jfUAal5HjPzAy7kCbIcxn14G7Do1zdeslDGt8/s320/face2gap.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5614842822091501154" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfRe2Tk5Z0TOemDX7CDSFWRyIs0KLzg1S9zsPs1i_VWIVbNxw9XKmikWpzffcPsOAch9p8B6dku0HZKfKm6exkhB_KCTYV_vmKizXY9XNG1Arwrj9pLPGQkNr1V90qY5ot5Qu-O5ghM62v/s1600/facebeepbeep.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfRe2Tk5Z0TOemDX7CDSFWRyIs0KLzg1S9zsPs1i_VWIVbNxw9XKmikWpzffcPsOAch9p8B6dku0HZKfKm6exkhB_KCTYV_vmKizXY9XNG1Arwrj9pLPGQkNr1V90qY5ot5Qu-O5ghM62v/s320/facebeepbeep.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5614842820416224562" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIPZ_A9BOBZAisVq5stXAsCWHFRgdF2a4OcsAANAZ4C8ctIdFGJunjSrkVP8O9WAD-SXQXjuDC76V_lCD8QvhaJu3lSkhXxXOxzhu8DRMePjj5fM3_5ALVsMS45lMNg5na9KqGmb0t7uWl/s1600/facebeepbeep.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIPZ_A9BOBZAisVq5stXAsCWHFRgdF2a4OcsAANAZ4C8ctIdFGJunjSrkVP8O9WAD-SXQXjuDC76V_lCD8QvhaJu3lSkhXxXOxzhu8DRMePjj5fM3_5ALVsMS45lMNg5na9KqGmb0t7uWl/s320/facebeepbeep.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5614842808145324034" /></a><br />Parker has been keeping us all entertained lately. He's got several new faces...usually they go right along with what he has "up his sleeve." There is the "I'm about to do something sneaky, are you watching?" "What do you mean no?" The "I'm busy avoiding you look.." and the "yes, I know I'm cute look.." He's definitely got the potential for "terrible twos" although we are working hard to keep them at bay. Funny, the other kids didn't go through them until 3-4, in Parker's case we might be early! Notice I DID cut the wispy hair, note to self, take child to a professional...mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com2tag:blogger.com,1999:blog-8022653569545240103.post-84771552704639953242011-05-23T10:30:00.001-07:002011-05-23T10:30:21.090-07:00Happy Birthday Parker<div><embed src="http://www.onetruemedia.com/share_view_player?p=e058b344ecf4379e86938b" quality="high" scale="noscale" width="408" height="382" wmode="transparent" name="FLVPlayer" salign="LT" flashvars="&p=e058b344ecf4379e86938b&skin_id=701&host=http://www.onetruemedia.com" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer"></embed><div style="margin:0px;font:12px/13px verdana,arial,sans-serif;line-height:20px;padding-bottom:15px;width:408px;text-align:center;"><a href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt2" target="_blank" style="text-decoration:none;">Photo and video editing at <span style="text-decoration:underline;">www.OneTrueMedia.com</span></a></div></div>mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com1tag:blogger.com,1999:blog-8022653569545240103.post-20094518683045527482011-05-23T10:16:00.001-07:002011-05-23T10:30:02.106-07:00Birthday Boy!! 2 years!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1iGnk88KZOpomksjAlUbIRljndZVEqvF_VgF6Rb0SUc-0qnZtQrLFiHWTycrcat8CAA5jPI5Jzg-zcRiWiHg2So3Rat2GJMLxAjdHEtwaAZFA5VhkigpyIeNJB563sD7kcpDoaWXdptn6/s1600/bdayhi.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1iGnk88KZOpomksjAlUbIRljndZVEqvF_VgF6Rb0SUc-0qnZtQrLFiHWTycrcat8CAA5jPI5Jzg-zcRiWiHg2So3Rat2GJMLxAjdHEtwaAZFA5VhkigpyIeNJB563sD7kcpDoaWXdptn6/s320/bdayhi.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5609964774882301762" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe5LjJmt8bJGA1TK_i1oTnw1uG5Y0I_Ow_72XrUO4t3_Yur-EObD6Fzsl3DrkA2uBEl3Jql7gspWVHkn4vgZYyNpTL1dZWTLZV3v4SY4yOmUDxTjCAjIJR52NMAihlYRPVYlkulUgS3ug2/s1600/bdayballoon.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe5LjJmt8bJGA1TK_i1oTnw1uG5Y0I_Ow_72XrUO4t3_Yur-EObD6Fzsl3DrkA2uBEl3Jql7gspWVHkn4vgZYyNpTL1dZWTLZV3v4SY4yOmUDxTjCAjIJR52NMAihlYRPVYlkulUgS3ug2/s320/bdayballoon.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5609964772051519506" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM8uixGcXRDhmoQj5u-RqZ9z6Hqy7sNdRGX2uAoy2MwvsNTx6ssAOc_18zfseXsOvUKnfup7TLBqmU8lsXAOuMvGlLuIl8qT2K5Li8uuHagcqcCFvHvxHh8e-Mvc3P9Xeqi7sRiPfVfw0A/s1600/bdaycake.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM8uixGcXRDhmoQj5u-RqZ9z6Hqy7sNdRGX2uAoy2MwvsNTx6ssAOc_18zfseXsOvUKnfup7TLBqmU8lsXAOuMvGlLuIl8qT2K5Li8uuHagcqcCFvHvxHh8e-Mvc3P9Xeqi7sRiPfVfw0A/s320/bdaycake.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5609964767621213026" /></a><br />Happy Birthday!!! Today is Parker's 2nd birthday...looking back we've come so far in 2 years! We had cake and balloon fun last night after dinner. Video is from last night. Parker is walking everywhere these days. Forgive the lack of pants on the video, they didn't survive the cake eating...shoes are our new best friend. We are working hard on keeping Parker from pronating in while walking. Some days are better than others. If you had told me there was so much to consider when walking I never would have believed you. 10 weeks now we've been walking. I'm dying to buy the cute fishermen sandals, but of course they are "no-no's" as are crocs, flip flops or anything cute and flimsy. BAH. So, I have settled on PediPeds, they seem to be the most sturdy. We are celebrating life and lots of new milestones. God's blessings are abundant! Happy birthday my precious boy, we love you!!!<br /><br />"God is able to do far more than we would ever dare to ask or even dream of, infinitely beyond our highest of prayers, desires, thoughts or hopes."<br />Ephesians 3:20mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0tag:blogger.com,1999:blog-8022653569545240103.post-29837593022632557622011-05-03T12:31:00.000-07:002011-05-03T12:56:37.202-07:00Sleep Study Night<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzgBe5Ewubt8DXSPbsT9aiqskUb66sX2H_hIAZ71QledXZZ63DQgGe4ZpZJWythCQQspIHPqbA3oL6D3uJGsmZMv-BQA9K4OPlXRHmODbyWp97iumuhXLAHnym2dVnd3KRj-IZO1uuyNIU/s1600/sleepstudy1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzgBe5Ewubt8DXSPbsT9aiqskUb66sX2H_hIAZ71QledXZZ63DQgGe4ZpZJWythCQQspIHPqbA3oL6D3uJGsmZMv-BQA9K4OPlXRHmODbyWp97iumuhXLAHnym2dVnd3KRj-IZO1uuyNIU/s320/sleepstudy1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5602580256327297122" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzSfbzzyg6wgrCGScIYpjJhI__JLNgQ6akFwmItef02ylzE-2s-37w3Sj5eTiLmToyqmpHoUqpJ6p_skeHJXHcF_NDa7XCEXXeniADe_vGJvkeAGLxxuA5HGpvLCaNZHOeBcPK-EW5g4Zw/s1600/sleepstudy2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzSfbzzyg6wgrCGScIYpjJhI__JLNgQ6akFwmItef02ylzE-2s-37w3Sj5eTiLmToyqmpHoUqpJ6p_skeHJXHcF_NDa7XCEXXeniADe_vGJvkeAGLxxuA5HGpvLCaNZHOeBcPK-EW5g4Zw/s320/sleepstudy2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5602580253340420018" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDXZKaZYaHps-xIonh3Gs6hFZJlhlnPp5xoPIu8b90wP1ziVMlpMGCQtigGgBssbmVWzXfsOt1EGXwnAgBNcF4rHf0j30SwXcsRHWEWUxKTzUcLmEvjW4VRykwdOpCxFwxAHALYJUK885w/s1600/sleepstudy3.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDXZKaZYaHps-xIonh3Gs6hFZJlhlnPp5xoPIu8b90wP1ziVMlpMGCQtigGgBssbmVWzXfsOt1EGXwnAgBNcF4rHf0j30SwXcsRHWEWUxKTzUcLmEvjW4VRykwdOpCxFwxAHALYJUK885w/s320/sleepstudy3.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5602580248651413650" /></a><br />we checked in at 6:45pm at Texas Childrens Hospital 21st floor..little did I know what we had in store! I knew these things were difficult, in fact the ENT told me, "most parents do it once and never again despite the recommendations for a study annually after age 1." I've had friends that had babies with apnea and they said it was miserable, even a fellow Warrior mom had one done last month on her son a few months younger than Parker...guess what they say is true "ignorance is bliss.." <br /><br />At 7:10 we started the process of "hooking him up" with wires and sensors to the extent I have never seen before! 25 on his head alone!! To say this was a difficult task would be an understatement. He cried, angrily screamed, sobbed, to the point of exhaustion, catching breath, you name it for 1.5 hours. The tech kept telling me "not to let anything touch the wires" come on, the poor kid was desperate to be held close in a hug by his Mom. Or, better yet, get down and run around! She had to remark his head with greasy red wax crayon at least three times. She tried to find reinforcements, but that tech was "having trouble of her own," so we went at it one more time. I can promise you I was not leaving without a fight although the tech almost had me convinced it wasn't going to work. So, we "papoosed" him (nice way of saying tie up all arms and legs in a sheet) and we toughed it out. This was after she put shunts on both arms (like velcro casts with sticks) to keep him from pulling wires off. By God's grace we pulled it off and he was "wired." Don't let the pictures fool you, he may be smiling in them, but he was fit to be tied. He got about 10 minutes of play before we started while I brushed my teeth for the night.<br /><br />Parker fell asleep quickly (not surprised) and he had 3 easy hours of sleep until midnight when he pulled the tubes in his nose out. So, we then spent the next hour getting those back in. He was trying to sleep through it all, but we had to wake him and crying commenced again. After three tries we finally prevailed and some "super sticky tape" was taped over what you see on pics. Asleep again...ahhh..then at 3, 4 and 5, the machine that read the nose wires (CO2) kept stopping so wires had to be replaced. Parker slept through this fortunately. <br /><br />At 6am, we were told "test is complete!" "Gee, how rested I feel!" LOL, Then came the "cleanup" of stickie tape which I'm still working on this pm. <br /><br />So, the tech asked me several questions (part of the study):<br />1) did he sleep here like at home? ME:Ah, NO, we never wake up at night nor have intentional torture before sleeping...<br />2) how long do you think it took him to fall asleep? ME:5 minutes SHE:Something like that she says, it was really fast..not surprised, he is easy to put done to bed, but after all that emotion it probably wouldn't have taken a minute!<br />3) how many hours do you think he slept? ME:6.5, SHE: no, more than that. ME: well, test was 8 hours, minus 1 hour in middle of night, and other "issues" maybe he did sleep more, but....<br /><br />we will get results in 72 hours, but what she did say was his REM was impressive, I tried to get %, but she hadn't figured that out yet. She wanted to know what we were doing differently. <br /><br />So, do I recommend the study? Well, I do, but be prepared. I will also wait to see what results say to make my final opinion. We don't suspect apnea and if test confirms that he does not have apnea, I might be inclined to "trust my gut" and pass on that annual study. Problem I see potentially with our study is Parker was so upset, his nose ended up getting stuffy, so is that a good time to take the test? How do they measure all that stress in the results?<br /><br />And, to top all of this off, I learned they watch you all night! Creepy for me, big balls on ceiling with cameras. Needless to say if they had studied my sleep they would have known I wasn't sleeping a wink! <br /><br />Gotta love this precious boy, smiles even in the midst of tortune..Papa Smurf look out!! "gee MOM, why can't I bend my arms, waving and playing is hard with these things on!"mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com3tag:blogger.com,1999:blog-8022653569545240103.post-90055853145590711322011-05-01T13:21:00.000-07:002011-05-01T13:54:32.912-07:00Has your child had a sleep study??Tomorrow evening Parker and I will check in to the luxurious "sleep center" at Texas Childrens Hospital where we will spend the night in hopes of having a successful study done on his sleep. Yes, the sleep center is the actual hospital. I have found that while there is a plethora of sleep centers for children 6+ and adults, no other facility can accomodate babies. Also interesting to note is that there is an 8 month waiting list for these studies at TCH! WHOA! I was blessed and I have a precious friend that helped us hit the top of the wait list, so here we are ready to go. <br /><br />Why a sleep study? This was not even on my radar screen until a month or so ago. I'm part of a group of "warrior Moms" that are up to date on the leading research and helping drive cognitive research. These Moms are some experienced ladies, they know the science inside and out and they have older kids so they have experience and answers that I have found diffcult to find in this journey. So, these ladies found that perhaps sleep is even more important that we give it credit. During sleep the GABA receptors change whether the child is sleep deprived or well rested. What I also learned is that even though I think Parker has NO sleep issues (doesn't wake at night, is quiet as a mouse sleeping, has terrific consistent sleep patterns, isn't lethargic during day time) many parents think their child has no issues, but they really do. See this quote from Cincinnati Childrens,<br /><br /><em>"They found that in general, parents of children with Down syndrome significantly underestimated the severity of their child's sleep disturbances. Overall, 69 percent of parents reported no sleep problems. Yet, 57 percent of children expressed abnormal sleep patterns. In the children with abnormal sleep study results, only 23 percent correctly predicted a problem. In a previous study, only 32 percent of parents suspected their child had obstructive sleep apnea, despite a 100 percent incidence of abnormal studies.<br /><br />There is concern that an excessive number of arousals may lead to fragmented sleep and sleep deprivation. Excessive sleep arousals and sleep fragmentation have been linked to symptoms usually associated with sleep deprivation such as daytime sleepiness, lack of energy and lack of initiative.<br /><br />Increased arousals have been associated with decreased neurocognitive abilities and lower results on IQ testing. It has been suggested that the increased arousal rate seen in children with Down syndrome may affect their daytime function and could exacerbate learning or behavior disorders. In children with Down syndrome, behavior and learning disabilities associated with sleep loss tend to be overlooked and assumed to be associated with the limited intellectual abilities associated with Down syndrome.</em>"<br /><br />Out of a group of Moms I talked to that had the initial sleep studies done at 2-3yrs, 5 of the 6 kids had issues when none thought they did. When I questioned Parker's Drs, the response was, ENT, " yes, National DS Society recommeds sleep study annually at age of 1 and older." Hmm, then why am I telling YOU I am doing a sleep study? Pediatrician.. "I'm not concerned, but I'm happy to order one." ENT said most families do it once and never go back since it is such a nightmare and then of course there is that little thing of the 8 month wait list! Seriously? What if I really thought Parker had a serious problem? How do YOU feel if you don't sleep well for a few days? IQ goes down a lot, right? I'm not excited about the hospital stay myself, but chock this up to a preventative visit and a pretty darn important one in my book. What we also learned was that giving ginko in several doses during the day rather than one dose effects REM sleep. This is BIG. Go goggle pubmed if you don't know what I'm talking about. Ginko has a half life and what we learned was that the kids are inhibited again without the continued dose during the day.<br /><br />Parker's Urologist appointment was this week too, let's just say we have to visit TCH again in the near future. Again, until we saw the holistic MD no mention of issues. What we learned is that with "100% certainty" Parker needs to have orchiopexy to help descend his testicles. There, too much information, sorry! What amazes me is most kids have this repair done before 2 years. More a concern about forming memories of this procedure than the other concerns some might have about this issue. Both his pedi and his endo knew this was a possibility. Again, when asked pedi.."I'm not concerned.." Endo, "if not dropped by June, you will need a specialist." So, being the type-A person I am, decided I will see specialist now...asked him if he thought it would change by June, "I can tell you with 100% certainty it will not." Well, at least he's confident, right? He did say it is minor procedure, day surgery, so unless cardio is concerned we should be in and out quickly. He said no rush, but better to do it sooner so we don't form memories of procedure. So, guess we will add that to our calendar too in the next few months. <br /><br />I'm not crying in my wheaties, just posting this so others can be sure they are vigilent. These are not big things in the grand scheme of things, new for us, but we are taking them in stride. This little one sure makes us grateful and thankful!!mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com1tag:blogger.com,1999:blog-8022653569545240103.post-80982988106186334732011-04-24T14:49:00.000-07:002011-04-24T15:24:41.162-07:00Easter! Picture Overload!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRbIWwJg1AMa8wPopWHN91qGrUIy1A_M7IfO0_Pj0xRF4V0juOLtDgU0u5NiiSj2uCv9Kq5GqWKnQSCcuKJczjUk8IIknGEJVkoRmztL_mke5JSH68xz-K_yZx106W17Z8bSdIguUmP9m1/s1600/peeps.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRbIWwJg1AMa8wPopWHN91qGrUIy1A_M7IfO0_Pj0xRF4V0juOLtDgU0u5NiiSj2uCv9Kq5GqWKnQSCcuKJczjUk8IIknGEJVkoRmztL_mke5JSH68xz-K_yZx106W17Z8bSdIguUmP9m1/s320/peeps.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5599278710112845186" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5D-0pWQ7kSKTjkd67dMoapL3bB6qfX8UQeZnEk2jA2ST_sNQRLWCpDVB4YTMHFEfth1vRAdsfSYHabHyrYSgD3QjOZxJZpT-2ysI7chKZFQMHeYQzj4itXvWhA3eTJbgT9aJigcntlVeg/s1600/peeps2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; 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margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9dt7s2pHTEsTAEDGCG6fu0vao_sk8iKq7Mz1zxlL9zpdLEPws7Z3GZZFHf5q6-bHbocdk0ibzlCfVJxcDJQkfzPV_Np2SyfjTIEZInavCNV69SJU77kJx5_1TLSfGcM5VuvN3ruQ4Dy1d/s320/egghunt2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5599277751139729234" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLE5x_fol3cbEfEzDPXclYUNNJ_vIoCqiPgad6JsdO5dL13a7W6GmFg7yK2UpoUTJ8KSPLNwqz1CDCnfOm1oGpEe7TZVCumIVmw7V3HF7zTJFfp-E9jccT0MRorCCJDP-pZBq_0y47C_-o/s1600/egghunt1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLE5x_fol3cbEfEzDPXclYUNNJ_vIoCqiPgad6JsdO5dL13a7W6GmFg7yK2UpoUTJ8KSPLNwqz1CDCnfOm1oGpEe7TZVCumIVmw7V3HF7zTJFfp-E9jccT0MRorCCJDP-pZBq_0y47C_-o/s320/egghunt1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5599277747282950450" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_c5pmL6Nn3rl9YLywvhykpSTmCMo3Own2EpiqwmXFpXlHkcWqUso3G-tKrCz3Is1lBW2qHGwi0ThlrOYnABju-nIkJgqXWlOcx_LU1nVekVR6EgmvYr3yyoyH83vzU8bQ8qLBkD-wu5te/s1600/egghunt.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_c5pmL6Nn3rl9YLywvhykpSTmCMo3Own2EpiqwmXFpXlHkcWqUso3G-tKrCz3Is1lBW2qHGwi0ThlrOYnABju-nIkJgqXWlOcx_LU1nVekVR6EgmvYr3yyoyH83vzU8bQ8qLBkD-wu5te/s320/egghunt.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5599277741864925954" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpUprAbq02VWTnkjDkLzBmK69jYJQdFosQgdWfTCb-mu_aA2sir40_p3nJLiqfnd4Xay6s2JZR7d37XaqHgLJ0FmoTRVHHoz04vASQRKMtHtb1mowUFFO_4yYioZYJvAq-qWyblouHzw9x/s1600/confetti.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpUprAbq02VWTnkjDkLzBmK69jYJQdFosQgdWfTCb-mu_aA2sir40_p3nJLiqfnd4Xay6s2JZR7d37XaqHgLJ0FmoTRVHHoz04vASQRKMtHtb1mowUFFO_4yYioZYJvAq-qWyblouHzw9x/s320/confetti.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5599277743030212610" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUSN0Z-a4e8Xcmyh-I7y-mdkqEUtfEU2dJ5P7nLFEMvSMlZMb1Sjj7wk4s4geDLCsmlqoCAErxM-vnPEVx5a5Wf9yNN2Wjb67qSbhJX-JnvDDW8nKPFNIj-G5cECZU6j6PnIfxNIUtrImM/s1600/confetti2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUSN0Z-a4e8Xcmyh-I7y-mdkqEUtfEU2dJ5P7nLFEMvSMlZMb1Sjj7wk4s4geDLCsmlqoCAErxM-vnPEVx5a5Wf9yNN2Wjb67qSbhJX-JnvDDW8nKPFNIj-G5cECZU6j6PnIfxNIUtrImM/s320/confetti2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5599277738877688418" /></a><br />I can't let this day go by without sharing the fun we've had this weekend. The evenings have been so terrific here and Parker loves to be outside, so we spend lots of time playing outside in between swimming, gymnastics, and baseball. Have to get that in before the heat is too much..the days have hit 90's already and the mosquitos are in full force, the pics show the nasty bites on his legs and arms already! I'm afraid he has his mom's skin, poor baby! This past week I made two road trips, to Dallas and Austin, so I feel "cheated" out of days! Next week we have a "lighter" week, only one "new" specialist to see..a pediatric urologist..working on a sleep study the following week..in addition to Dallas for our ND 3 month eval we saw the ENT and Parker's ears continue to be fantastic! No problems with congestion or ear infections, we are so blessed! Our ENT wants to know how we keep him so healthy and doing so well! I met a Mom of a 4 yr old little girl with DS in the waiting room. She kept watching him play with the cars (zoom, zoom,zoom he says) and him talking to the other children interacting and having fun. She came over and gave me a perplexed look, then said, "you don't use ECI do you?" hmmmm...no...my heart ached for her, her little girl wasn't verbal at all and she was really in her own world almost fearful of the kids. Please don;t misunderstand me, ECI probably has some terrific folks and programs, it just didn't work for our family. Parker went over to play with her, but she got up and hid with her Mom. I am reminded by those encounters that we have so much to be thankful for and often when I decide to throw a pity party for me, God gives me those encounters!<br /><br />So, egg hunting is a new favorite..maybe next year we will put them in the basket instead of throwing them and saying "ball" The pics tell the story, "Mom why are they so yucky when I throw them?" The confetti eggs were more fun to put our fingers in and really the new favorite thing is our pool (pants are off because we sat in pool). Guess we will have to add swim lessons this year. Parker loves to be in the water, now he can put his face in and blow bubbles. Good thing we still have the pool gate...<br /><br />Praising God for his blessings, especially this Easter Sunday! 1 Peter 1:2-5"Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time."<br /><br />Yes, I am surprised to learn they still make 'PEEPS" I have been told they really are terrific and now they come in chocolate flavor now...YUCK! Give me black jellybeans and dark chocolate eggs anyday! :)mlfonthttp://www.blogger.com/profile/13191239340070697033noreply@blogger.com0