tag:blogger.com,1999:blog-91240402073487336832024-02-07T15:56:40.929-05:00Karly's WorldThis blog is to keep family and friends updated on the things going on in Karly's World. Karly is our daughter who was diagnosed with Wolf Hirschorn Syndrome (4P-). She is 5 years old and is such a loveable little girl.Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-9124040207348733683.post-79572897576389591332011-03-16T21:38:00.002-04:002011-03-16T22:06:36.533-04:00Life...I am going to attempt to catch you all up on the current happenings in the Shellenberger world.<br /><br />Well Miss Karly first...since the blog is named after her...she has blossomed in to such a little person lately. She is into EVERYTHING. I know I have said that before but it has taken on a whole new meaning. In her new wheelchair she can reach just about anything she wants, nothing is safe from her. She is in control when she is in her wheelchair. She LOVES to run into people; we don't love it as much as she does. She has even received a "time out" at school for trying to run over the little kids.<br /><br />Her vocabulary has taken off, big time. Tonight at Target she felt the need to let everyone know that KJ was her's. (KJ is my best friend and Karly refers to her as "My KJ"~ just a bit possessive). She also said "bye" to just about everyone she saw. Now remember this is my daughter who is non-verbal according to the doctors. Trust me, she is verbal. Another favorite of her's is brother, it's not always a very clear brother but we all know who she is talking about for sure. She loves her big brother to death.<br /><br />She has learned to shake her head no and does it a lot. You ask her any question and it is an immediate shake of the head no. Especially if her hair down because she likes to feel it fling back and forth on her face.<br /><br />Her OT has had to come up with all completely new goals because the ones that she had been working on for about 7 months she all of sudden can do them with out any hesitation. She has mastered most of her PT goals and speech is coming along too.<br /><br />Her weight continues to slowly increase. She has been hanging around 34-35 lbs. Depends on what she ate for dinner Sunday night (she gets weighed every Monday morning.) She is growing tall like a weed though. She is now in a solid children's size 5. We are out of toddler clothes. It's so crazy how she doesn't grow for so long and now every time I try to put an outfit on her it's too small. I am not complaining about it, in fact I love it!<br /><br />As for the rest of the family... Ethan is doing wonderful as always. He just finished up travel basketball. They had a great season but I think the whole family is happy to be done with it (except Karly who LOVES to watch basketball...hours and hours of it). Baseball is starting to gear up for Ethan and soccer will follow in the next few weeks. Doesn't ever end, that's ok though Ethan loves his sports. He turns 10 in a few weeks. I can not believe he's going to be 10!!! Of course he is super excited for his birthday. He's got his birthday wish list started.<br /><br />Jim is busy with tax season. He is either at work or at home having dinner before heading back to work. :( Only a few more weeks, thank goodness. Me? well... I have made some major changes in my career. I have accepted a position with my company's sister company and I will now be working out of my home and doing some travel. (about a 2 hour radius, not too bad) I am very excited, nervous and a little freaked out by the change but I know it's the right thing for me and for the family. I will miss my friends at the office, I have been there 9 years and have some really great friends there. But they will be my friends no matter where my office is. Step one of this new opportunity is a week long trip to Des Moines, Iowa. I leave this Sunday and I am looking forward to it. Of course I will miss the kids and Jim, however the thought of a lot of "me" time is exciting.<br /><br />When I get home on Friday, Jim and I and our best friends are leaving for a weekend in the Finger Lakes in NY. (I will wake up in Iowa, Fly to Detroit, Fly to PA and then drive to NY...Yes I am insane.) I am really looking forward to this weekend. We are going to visit wineries all day Saturday and just have a great time. But I will miss my local WHS families that are getting together that weekend :( Next time guys!<br /><br />Ok so now you are updated on all four of our lives...Hope everyone is well.Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com4tag:blogger.com,1999:blog-9124040207348733683.post-84787286477051943632011-02-16T20:51:00.005-05:002011-02-16T21:24:08.798-05:00Some of my favorites...I have been sitting here reading some other WHS mom's blogs and really want to post but I got nothing left tonight...so I decided to post some of my favorites pictures of the kids from the past year...enjoy!<br /><br /><p align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAXfDLbgOzkCBTzXVJI5w8TLndJPslnmfxVnxlPYJGnjPWsLV-j8QpwhpTmxUjJm6vYEkNQyF5JIxDzUJrca7ed3c_RqkMHqKDfTJDF4hHeU9Wn3JtdUE-YPTXW7uJ0cClQ-soSXIl2AA/s1600/psu+031.jpg"><img id="BLOGGER_PHOTO_ID_5574475513129341618" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAXfDLbgOzkCBTzXVJI5w8TLndJPslnmfxVnxlPYJGnjPWsLV-j8QpwhpTmxUjJm6vYEkNQyF5JIxDzUJrca7ed3c_RqkMHqKDfTJDF4hHeU9Wn3JtdUE-YPTXW7uJ0cClQ-soSXIl2AA/s320/psu+031.jpg" border="0" /></a> <span style="font-size:85%;">Karly riding rides at Hershey Park this past summer </span></p><p align="center"><span style="font-size:85%;">(Hershey, PA~Home of the 2014 4P- Support Group National Conference!!! )<br /></span></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn1PeRcz4WHoOi6kIWRwLdMU3aoi1msLGa9kFlidE2z42HP4s5_IkdyPoulDMq-FdTjxGhYZOGt3y0h9gT0IuyUMFBD5PhtoU1DO-qG_5VRDASBUC9jonAj9Rx2YvDxH7Bfnq32rp6uyI/s1600/psu+014.jpg"><span style="font-size:85%;"><img id="BLOGGER_PHOTO_ID_5574475506448233298" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn1PeRcz4WHoOi6kIWRwLdMU3aoi1msLGa9kFlidE2z42HP4s5_IkdyPoulDMq-FdTjxGhYZOGt3y0h9gT0IuyUMFBD5PhtoU1DO-qG_5VRDASBUC9jonAj9Rx2YvDxH7Bfnq32rp6uyI/s320/psu+014.jpg" border="0" /></span></a></p><p align="center"><span style="font-size:85%;">Family Time at PENN STATE! </span></p><span style="font-size:85%;"><img id="BLOGGER_PHOTO_ID_5574475505198720674" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglGJ59RowYMMpFdeNsJG1sgyVNEjAvtDrlyCU9KE4ju5yKkE3H6pkwmk0yHST0AEzZIBwSVYN1Wk1yL8n1sECWw6S5pe9UjO2KOR9uycEt9GYJ_4VUD9m8jHnrBBhi0zSMN0UvGPi6lLA/s320/halloween+020.jpg" border="0" /> <p align="center"></span> <span style="font-size:85%;">2010 Halloween (Ethan was Drew Brees and Karly was a fairy!)</span></p><p align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi7HSTFI0KsWahLg-_guERnSw6o-nPqPf57OHx0iT0XkWoJQpdYtSE2W7AGszHz5kNWo61z7QAU9RiNjKx71YUnt7OBfXuxekcb_OJ3NFCzx73ppmnRzHHzDs4R9uIrn8G1xyrzITswx4/s1600/jan+003.jpg"><img id="BLOGGER_PHOTO_ID_5574475500915103442" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi7HSTFI0KsWahLg-_guERnSw6o-nPqPf57OHx0iT0XkWoJQpdYtSE2W7AGszHz5kNWo61z7QAU9RiNjKx71YUnt7OBfXuxekcb_OJ3NFCzx73ppmnRzHHzDs4R9uIrn8G1xyrzITswx4/s320/jan+003.jpg" border="0" /></a><span style="font-size:85%;"></span></p><p align="center"><span style="font-size:85%;"> Karly hanging out (in matching outfits) with her BFF Ashley.<br /></p><p></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI_gSJXZl6VUbfK4QMpyqluEXjGrDckOasy_bqL7ERtNUggVueiaRsE7a1CW2VbxZRwOmkpccsl-RVOueWkYG4AebFpggtmM1XMusqIODeQTULUKHRAlzCTTRP98tsWU1wrFW4Z2g9F2U/s1600/kj+and+k.JPG"><span style="font-size:85%;"><img id="BLOGGER_PHOTO_ID_5574475494781537810" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI_gSJXZl6VUbfK4QMpyqluEXjGrDckOasy_bqL7ERtNUggVueiaRsE7a1CW2VbxZRwOmkpccsl-RVOueWkYG4AebFpggtmM1XMusqIODeQTULUKHRAlzCTTRP98tsWU1wrFW4Z2g9F2U/s320/kj+and+k.JPG" border="0" /></span></a></p><p align="center"><span style="font-size:85%;">Karly with her 2nd Mom, Miss KJ. Picking pumpkins in the fall.</span><br /></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5HzFcZtZCFzd-E05L-XUxyFHD5bEQrlTsJyKI5w6cOKGSr910AsDUzyH7BTOeQfRasvy162SRYSTK0p2riKuY12FZaJndo3Q9wFV-MOfNYqdQWhHAHT0xCs3k6Ax4K562Bne96eSsI1A/s1600/fall+2010+069.jpg"><img id="BLOGGER_PHOTO_ID_5574473354196949778" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5HzFcZtZCFzd-E05L-XUxyFHD5bEQrlTsJyKI5w6cOKGSr910AsDUzyH7BTOeQfRasvy162SRYSTK0p2riKuY12FZaJndo3Q9wFV-MOfNYqdQWhHAHT0xCs3k6Ax4K562Bne96eSsI1A/s320/fall+2010+069.jpg" border="0" /> <p align="center"></a><span style="font-size:85%;">Miss Karly playing at the Pumpkin Patch in the box of corn. She loved it!</span><br /></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXcyjGd4ikaMdWA0Wmv3qd91iblWlGjHeTexwZSJhY3xrpAbZ8x6gQklG8YmalRQB0WfWk0RXSSNg6EJkDJcaOTM2Go75kKl6blh-wj9eFLPPjpODlOHjF6fl0x0LSNzKuO12IVjkekmE/s1600/fall+2010+022.jpg"><img id="BLOGGER_PHOTO_ID_5574473351083632658" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXcyjGd4ikaMdWA0Wmv3qd91iblWlGjHeTexwZSJhY3xrpAbZ8x6gQklG8YmalRQB0WfWk0RXSSNg6EJkDJcaOTM2Go75kKl6blh-wj9eFLPPjpODlOHjF6fl0x0LSNzKuO12IVjkekmE/s320/fall+2010+022.jpg" border="0" /> <p align="center"></a><span style="font-size:85%;">Karly taking a ride on Daddy's shoulders at Shippensburg's Homecoming. </span><br /></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUnTreJPS9i5yilC4X02Yeb982zgkixZxuSkH3SuNOC-8jDddARWk70CenDQBjTA83tUmmIgrgnVm5gnIgr9T7bhagh2AjQYi0NZYt5iicHj3OD2Bu847egZGttr7I3AyAJFitL_saaLU/s1600/fall+2010+015.jpg"><img id="BLOGGER_PHOTO_ID_5574473349130295330" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUnTreJPS9i5yilC4X02Yeb982zgkixZxuSkH3SuNOC-8jDddARWk70CenDQBjTA83tUmmIgrgnVm5gnIgr9T7bhagh2AjQYi0NZYt5iicHj3OD2Bu847egZGttr7I3AyAJFitL_saaLU/s320/fall+2010+015.jpg" border="0" /> <p align="center"></a><span style="font-size:85%;">Mom and the kids tailgaiting before kickoff at SHIP's Homecoming. </span><span style="font-size:85%;">It was a lot of fun to take the kids on campus and show them around. </span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjynNeMezq0ORqr_LxNCBf9Hqyd8YUQXHKeZtINfO2cXs0h6SlbOrsVY1wNlQwd5Tm1HAHJuj6vHd_WzlKKDVnuH8vB8rGAf5mtYlLaMoNbwwJU52lhr0YOZXMDXnQj4qeq1oGg3NTdRM/s1600/fall+2010+006.jpg"><img id="BLOGGER_PHOTO_ID_5574473345195338898" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjynNeMezq0ORqr_LxNCBf9Hqyd8YUQXHKeZtINfO2cXs0h6SlbOrsVY1wNlQwd5Tm1HAHJuj6vHd_WzlKKDVnuH8vB8rGAf5mtYlLaMoNbwwJU52lhr0YOZXMDXnQj4qeq1oGg3NTdRM/s320/fall+2010+006.jpg" border="0" /> <p align="center"></a><span style="font-size:85%;">Karly and her loving big brother at the corn maze. He is so good with her. </span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg24lu6B6mmlRFU18cEOAN3g_RBc3Qs9ZdsQP16NRdE98EYWums-3NTZlUgUs49V_Ac67_0HSgpGEOktM6Cq1EVrxRJmatDC21nuvNqA4ru1Xm9fxGkEFiJOmupHvmjHs6Q3wV8-g8ogS0/s1600/christmas+033.jpg"><img id="BLOGGER_PHOTO_ID_5574471811932877842" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg24lu6B6mmlRFU18cEOAN3g_RBc3Qs9ZdsQP16NRdE98EYWums-3NTZlUgUs49V_Ac67_0HSgpGEOktM6Cq1EVrxRJmatDC21nuvNqA4ru1Xm9fxGkEFiJOmupHvmjHs6Q3wV8-g8ogS0/s320/christmas+033.jpg" border="0" /> <p align="center"></a><span style="font-size:85%;">Christmas Morning! No need to say anymore.</span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0Sc1MPGQYlJYZu8OD5Q1HytLn-H_jJzfVtTuzm7v2UvaVNRGMgY-bqqvgnXjNvvmFpt9d-D8KLrpUVB8X66qzpr7RKLHpcazmkB7G54BH0ptDPDQaS-jEhu1E3g2hWiRztL7RAeJs9A8/s1600/album+019.jpg"><img id="BLOGGER_PHOTO_ID_5574471810977504002" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0Sc1MPGQYlJYZu8OD5Q1HytLn-H_jJzfVtTuzm7v2UvaVNRGMgY-bqqvgnXjNvvmFpt9d-D8KLrpUVB8X66qzpr7RKLHpcazmkB7G54BH0ptDPDQaS-jEhu1E3g2hWiRztL7RAeJs9A8/s320/album+019.jpg" border="0" /> <p align="center"></a><span style="font-size:85%;">Beach Trip 2010. </span><span style="font-size:85%;"></p></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW-3PoAfN_HSLASdY-4c0d_AsPIf-GQPZ4iaWzgcf96mi_-KDC4uXmmtrAau7EQcoIdEwQd7cwIHMP8eh6Mx6JpOk2f5X-EvXzXamxDSqfTEOb7Kd5XmgWltu5H9vvHPAsB7PXxmAoWdA/s1600/album+018.jpg"><img id="BLOGGER_PHOTO_ID_5574471804555289346" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW-3PoAfN_HSLASdY-4c0d_AsPIf-GQPZ4iaWzgcf96mi_-KDC4uXmmtrAau7EQcoIdEwQd7cwIHMP8eh6Mx6JpOk2f5X-EvXzXamxDSqfTEOb7Kd5XmgWltu5H9vvHPAsB7PXxmAoWdA/s320/album+018.jpg" border="0" /> <p align="center"></a><span style="font-size:85%;">Our little fish...she LOVES the water.</span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1SxwpqgmAjpGWco2IRgX18grdZeJIW1AIUngcozlBg__MaBO4n8Yz1llVSz9fJiYKUOgccm9fUxfFAFggRYfhe4FZGE3jMwNkYdS0MIILIBItGNWDCDoTVkmCfeA5DV4I5NNPjN8BIWQ/s1600/album+007.jpg"><img id="BLOGGER_PHOTO_ID_5574471802952498290" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1SxwpqgmAjpGWco2IRgX18grdZeJIW1AIUngcozlBg__MaBO4n8Yz1llVSz9fJiYKUOgccm9fUxfFAFggRYfhe4FZGE3jMwNkYdS0MIILIBItGNWDCDoTVkmCfeA5DV4I5NNPjN8BIWQ/s320/album+007.jpg" border="0" /> <p align="center"></a><span style="font-size:85%;">One of the things she does best...watching Ethan play sports.</span></p><p align="center"> </p>Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com4tag:blogger.com,1999:blog-9124040207348733683.post-4907342884743238642011-01-19T22:05:00.005-05:002011-01-19T22:33:39.227-05:00Yeah I know it's been a long time....<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT1GdgsYAVX2n0ZtjhiQPv1h0OU9eWevUnXmA-JXjq57zTcqk07fl7eHJKNy3JQbKV3YGocNs5QVpym-9y-XPs57W16y-o9EN7_6jB1EmVD6l6I-8A9H-vv8PKGdu1jqWRrcpr-zUEDu8/s1600/karly+wheelchair.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT1GdgsYAVX2n0ZtjhiQPv1h0OU9eWevUnXmA-JXjq57zTcqk07fl7eHJKNy3JQbKV3YGocNs5QVpym-9y-XPs57W16y-o9EN7_6jB1EmVD6l6I-8A9H-vv8PKGdu1jqWRrcpr-zUEDu8/s320/karly+wheelchair.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5564105935198900274" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitqDzKUae2tu0aAqOZfdGQ0JROko-w2Vy7bwHLbDxiJWGQgTUy0DH6G9p4Nuwoy30aI26lBgJgjizYYFnPsqSMbKe5E9Ew5Q1Q5A0-OlabvMKC-oV3hSrQzIgw8aUBz8nS4bUoQU7WzO0/s1600/karly+bday+064.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/AVvXsEitqDzKUae2tu0aAqOZfdGQ0JROko-w2Vy7bwHLbDxiJWGQgTUy0DH6G9p4Nuwoy30aI26lBgJgjizYYFnPsqSMbKe5E9Ew5Q1Q5A0-OlabvMKC-oV3hSrQzIgw8aUBz8nS4bUoQU7WzO0/s320/karly+bday+064.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5564105622557652002" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZVtPx3nSV-R7h7TNsGdoFomdV8mLd2TNZs05CNELHajMEUAfydt7Zcf4c9JjrFJlQMkHP3V5LdTBPrejxJWwOEvAJ6U7k9NWZhxk1umtyUY9xIWYC4C7A4ZNQ7m3lHFVVg7LEhE6gMzk/s1600/karly+bday+093.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/AVvXsEhZVtPx3nSV-R7h7TNsGdoFomdV8mLd2TNZs05CNELHajMEUAfydt7Zcf4c9JjrFJlQMkHP3V5LdTBPrejxJWwOEvAJ6U7k9NWZhxk1umtyUY9xIWYC4C7A4ZNQ7m3lHFVVg7LEhE6gMzk/s320/karly+bday+093.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5564104489230145970" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYRnfNAOnIFhz5LNorSoMyrkDX3Mpwi71BOg8AtR-vMxjpbmiQ-9eUECozJjYFATnzX2h9Psh82iL4-VVj-jQXHWC8or_YbbQGP0Pj1N-4Med_S0fR1hs-O4IFqbwBNnHwCV6hvpq2I6M/s1600/christmas+016.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/AVvXsEjYRnfNAOnIFhz5LNorSoMyrkDX3Mpwi71BOg8AtR-vMxjpbmiQ-9eUECozJjYFATnzX2h9Psh82iL4-VVj-jQXHWC8or_YbbQGP0Pj1N-4Med_S0fR1hs-O4IFqbwBNnHwCV6hvpq2I6M/s320/christmas+016.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5564104486109261634" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfmrB6Yc2PS2sBeN7KwHNSwZbgref2MWXTj7Dqz4UkR32vmNvsbwzKQ5OHqZfkSVjIlxPDT0qpzt2XpsnaYhvY7Dugy8BxKYVm_02hqJ7NHXogX-vM-XJZYl4q2Riw2l9w0iwsrH-YBUA/s1600/karly+bday+057.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/AVvXsEjfmrB6Yc2PS2sBeN7KwHNSwZbgref2MWXTj7Dqz4UkR32vmNvsbwzKQ5OHqZfkSVjIlxPDT0qpzt2XpsnaYhvY7Dugy8BxKYVm_02hqJ7NHXogX-vM-XJZYl4q2Riw2l9w0iwsrH-YBUA/s320/karly+bday+057.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5564104474695075890" /></a><br />OK so it's been awhile...We are still here. Everyone is doing fine. We survived the holidays with no major incidents. Although I was a nervous wreck on Christmas Eve; I did not want a repeat of last year. (Spent in the ER with seizures)<br /><br />As for Miss Karly, well, she has really been growing. Growing physically and developmentally. She is really taking off. As of Monday, she weighs 34.8 lbs. She's very tall and skinny. She has grown 3 clothing sizes in the past year. I love it! She is now in girls size 4, no more toddler clothes. <br /><br />Developmentally...well holy cow! She now has several words she uses, she signs "more" all the time, she is standing on her own for a brief periods of time, she is pushing herself independently in her wheelchair, she is walking all around using a walker... the list goes on. Her favorite word is "snack". Which is very fitting because the girls loves to eat. And my goodness the girl can eat, she would eat for hours if we let her. <br /><br />We have signed her up for kindergarten. Yes, I know I can't believe it either. She turned 5 in November and is eligible for kindergarten in the fall. I am happy that she will have class 5 days a week. She currently only gets 3 days a week. We are still working out all the details of her transition but I am very excited for the next step for her. <br /><br />One of the best things that Karly has started to do more of lately is that she actually plays with you. She loves to play with her brother. She follows him around and tries to do what he does. It cracks me up to watch the two of them play together. He is obsessed with sports and he has her throwing the ball to him as he is running different football plays in the living room. (I think he thinks he can get away with more if he involves her, and he loves her to pieces!) She has given high fives for awhile but now Ethan has taught her to give pounds. He is so proud that he taught her (as he should be!) Although you need to be prepared or she tends to punch you in the face if you aren't paying attention to her. <br /><br />Well that's the quick and dirty version. I will try to be more regular with the blog posts!Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com3tag:blogger.com,1999:blog-9124040207348733683.post-50574687284316920442010-07-14T19:48:00.004-04:002010-07-14T19:52:08.043-04:00Finally I blog...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdbVCWlrSXPLGI9pKgR9GExt3IxaMDrlRRaE8sIb6p07IXxWAxr1hyoUtn97xl1Nh8AN48UJc5OgvZBuiRvROgbtD_jQFoghOqT0xeANkTSctbgico-lk0EF3uO_PbFykY0pFzBQR_M88/s1600/Picture+1044.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/AVvXsEgdbVCWlrSXPLGI9pKgR9GExt3IxaMDrlRRaE8sIb6p07IXxWAxr1hyoUtn97xl1Nh8AN48UJc5OgvZBuiRvROgbtD_jQFoghOqT0xeANkTSctbgico-lk0EF3uO_PbFykY0pFzBQR_M88/s320/Picture+1044.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5493913839997376626" /></a><br />Finally I blog… I know it’s been months. Unfortunately the reason I am home tonight with “nothing” to do is that Miss Karly had a seizure today at daycare. She is doing good. In fact she’s sitting in front of me while I type eating potato chips. Her seizure happened about 1:00 pm this afternoon. It was 10 minutes which is REALLY long for her, but she was in good hands surrounded by the best nurses. I got there to Pediatria right as the seizure was ending, I might have pushed the speed limit at bit. But I am only 3.7 miles away. They had her on an oxygen monitor and were checking all her vitals. Did I mention how much I love this place??? I called her neuro from there and the nurse at Pediatria talked to the doctor’s office for me and explained everything that happened. It was so nice to let someone else do the explaining. So the outcome is that we are up’ing her Keppra to 3.0 ml morning and night. I am hoping it was just a random seizure because she grew out of her old dose of Keppra since she’s getting to be so big. <br /><br />Anyway since this crazy day occurred, our plans this evening had to change. The boys (meaning Jim and Ethan) continued with our plans to go the AA All-Star Game here in Harrisburg, while Karly and hold down the fort at home. I have already received about 20 messages that they are having a blast. They met some of the players from the AA Yankees team. Ethan was in heaven. I can’t wait to hear there stories tonight when they get home.<br /><br />So to catch up on what’s been going on in Karly’s world…Well the best news is that she walked for over 20 minutes on Monday in her walker. AWESOME NEWS!!! She is doing great and walking so well supported and working her on unsupported too. Her new braces came in yesterday. She now has Sure Steps; she has only worn them for two days.<br /><br />She is really growing and changing. She seems more and more like a toddler everyday. She is doing new things all the time. She now clearly says Momma and an occasional Dada and Brah (brother) too. She now points to whatever it is that she wants (and a lot of things she doesn’t want) but it is very clear that she points out want she wants. If she wants a drink during dinner, she will point to her cup and not eat another bite until she has a drink. <br /><br />Life has been very crazy we don’t slow down much hence the not blogging for a few months. This coming weekend we are going to visit with our wonderful 4P- families. I am so excited to see them all again. (Although I was lucky to catch up with some this past weekend at a bridal shower) This time a new family is going with us to NJ. We met them a few weeks ago and they have an adorable little boy with 4P-. They are wonderful, we instantly clicked with them and I am so excited that they are coming along to meet the rest of the crew. We have such a great group of “local” parents. I can’t wait to see them on Saturday and introduce them to the new family.Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com0tag:blogger.com,1999:blog-9124040207348733683.post-52283462693435644282010-05-21T23:16:00.005-04:002010-05-21T23:39:54.691-04:00Our trip to Disney!It's been forever since I posted but life has been so crazy. So here is a quick photo entry about 0ur trip to Disney! We had an absolute blast and the kids loved every minute of it!<br /><div align="center"><img id="BLOGGER_PHOTO_ID_5473932814811299618" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3tGW495m0jAzNiokHlcUEiAcyRbBWl7iXhP28oaM8rAwA03jMPmTgNT_GdtjOLwdsqs7t5asd4yj0SWibG9fFuilDPSZbQidJVQDzlxzkSjSvwy4A98PqcYXoIbRwVgevnc15laP7RKU/s320/Picture+399.jpg" border="0" /> The family with Pluto.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4zRO3isA-sxFZuWYjcWBb28-lIqnATyi83-UayCNN-j32c6dFY_LY8UIsBebzKoiFKYoU3oexixKZfYdVoFw1ts7PjCyVfDmnttiTZLo7RP6mJ7zge8nRQy-0we0EsJrZXtGmzU42vXE/s1600/Picture+210.jpg"><img id="BLOGGER_PHOTO_ID_5473932806350097410" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4zRO3isA-sxFZuWYjcWBb28-lIqnATyi83-UayCNN-j32c6dFY_LY8UIsBebzKoiFKYoU3oexixKZfYdVoFw1ts7PjCyVfDmnttiTZLo7RP6mJ7zge8nRQy-0we0EsJrZXtGmzU42vXE/s320/Picture+210.jpg" border="0" /></a> Riding rides at Seaworld.<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKVSk9yQT24gtSthJuy3-pdREtHuRkRU_x2Ubxb0o4OARz-HOlfM2GK7AcDtappoNEhj4czMnZL4j6FjMGUxAYXS9lixKjAr74cHYKo9rSgZ5fxRNQhM6mxTHYAjFkSIW5S5xmse-jKyc/s1600/Picture+146.jpg"><img id="BLOGGER_PHOTO_ID_5473932795773197522" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKVSk9yQT24gtSthJuy3-pdREtHuRkRU_x2Ubxb0o4OARz-HOlfM2GK7AcDtappoNEhj4czMnZL4j6FjMGUxAYXS9lixKjAr74cHYKo9rSgZ5fxRNQhM6mxTHYAjFkSIW5S5xmse-jKyc/s320/Picture+146.jpg" border="0" /></a> Waiting to feed the dolphins<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge4luP_kMd6NGRR8WrTX4AYmN9SuPN3SmFIcjzui4Ibor0N4uReGJeL5chyphenhyphena2Y0ixCXhGnZOOySv_dcEiqfY4Q0LJcxPd7txwmuuOwWu2O-R0CjyLhwEeEvzrlbnwdGHLZxVGbBmACsb4/s1600/Picture+075.jpg"><img id="BLOGGER_PHOTO_ID_5473932791223277026" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge4luP_kMd6NGRR8WrTX4AYmN9SuPN3SmFIcjzui4Ibor0N4uReGJeL5chyphenhyphena2Y0ixCXhGnZOOySv_dcEiqfY4Q0LJcxPd7txwmuuOwWu2O-R0CjyLhwEeEvzrlbnwdGHLZxVGbBmACsb4/s320/Picture+075.jpg" border="0" /></a> Playing in the pool at the village.<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnrC1wRqLQTj5fKQP-bj_obdfUJ6DcqrypC-HCi8Yv7YUL001b4k58ZW8O1EeihW0vwp2FtDJFabq-nYRo56GVXB0GPbT1X14jMLTqWqyqxlQddYXluhQzfDkakEFubtcISeadZSSqdSw/s1600/Picture+064.jpg"><img id="BLOGGER_PHOTO_ID_5473932784465402002" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnrC1wRqLQTj5fKQP-bj_obdfUJ6DcqrypC-HCi8Yv7YUL001b4k58ZW8O1EeihW0vwp2FtDJFabq-nYRo56GVXB0GPbT1X14jMLTqWqyqxlQddYXluhQzfDkakEFubtcISeadZSSqdSw/s320/Picture+064.jpg" border="0" /></a> Posing for a picture at the water park in the village.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9i7R-j9BpGYJzSBe-eCrCyCZuIxVlxEnWm7_3wICP0XPzgTpawtjfvR8Nm_Cl-Bvt4m59W8Eal6AVW6WFOuNCP1cO-aBYUJypiYk2A1ypG9BPP88M8Aq7UR2cP8g2u2j8PTS6qo4liuc/s1600/Picture+172.jpg"><img id="BLOGGER_PHOTO_ID_5473930148129889298" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 239px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9i7R-j9BpGYJzSBe-eCrCyCZuIxVlxEnWm7_3wICP0XPzgTpawtjfvR8Nm_Cl-Bvt4m59W8Eal6AVW6WFOuNCP1cO-aBYUJypiYk2A1ypG9BPP88M8Aq7UR2cP8g2u2j8PTS6qo4liuc/s320/Picture+172.jpg" border="0" /></a> Feeding the Dolphins at Sea World! My favorite day of the whole trip.<br /><div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWvaKX6ubgMpbs5Ag9-uTi6UM7h_LsdH3NO48xXP5BWG76tyNS04_gS-a0UDJkGCgikdIrFGku52_3EtqoATdUNnKQ6xrwzjujkO0RrFc_e_1ZDlhZCxp8hsY4X5jo_wnzewnH7b9Yghs/s1600/Picture+051.jpg"><img id="BLOGGER_PHOTO_ID_5473930127918640850" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWvaKX6ubgMpbs5Ag9-uTi6UM7h_LsdH3NO48xXP5BWG76tyNS04_gS-a0UDJkGCgikdIrFGku52_3EtqoATdUNnKQ6xrwzjujkO0RrFc_e_1ZDlhZCxp8hsY4X5jo_wnzewnH7b9Yghs/s320/Picture+051.jpg" border="0" /></a> Karly at the Icecream palor, where we spent a lot of time.<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJa7Bqky3RRyye53T8OFyzLbzsv1VxK-A8_oePZUJtO9x8EwL0Huci4MyaHAH_XC7v6bsXE1Q6ytLbvEhc-0yG1AjcQHM4xGcmtPWUJsyWa5TqaPgU91yl0AtmiA8Eq2EBKxPdpEz5J40/s1600/Picture+400.jpg"><img id="BLOGGER_PHOTO_ID_5473930156904424082" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJa7Bqky3RRyye53T8OFyzLbzsv1VxK-A8_oePZUJtO9x8EwL0Huci4MyaHAH_XC7v6bsXE1Q6ytLbvEhc-0yG1AjcQHM4xGcmtPWUJsyWa5TqaPgU91yl0AtmiA8Eq2EBKxPdpEz5J40/s320/Picture+400.jpg" border="0" /></a> Hanging around with Goofy!<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9xkQNbFu5CI795fLiQZtviRQklNoQ0yJy2fauHecpnhTkvVYeTYbkFh3hTr6lRYF1X0-ldaGLKmYxyDjO-Nm2RlzmbY22bEBz56ZGAUWc86xRyCbQyFw5fWHXfceokLtlxWe30QgtrbE/s1600/Picture+030.jpg"><img id="BLOGGER_PHOTO_ID_5473930117059697314" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9xkQNbFu5CI795fLiQZtviRQklNoQ0yJy2fauHecpnhTkvVYeTYbkFh3hTr6lRYF1X0-ldaGLKmYxyDjO-Nm2RlzmbY22bEBz56ZGAUWc86xRyCbQyFw5fWHXfceokLtlxWe30QgtrbE/s320/Picture+030.jpg" border="0" /></a> Our home for the week!</div><div><br />I will post more later but at least it's a few to get started. </div></div></div></div></div></div></div></div></div>Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com4tag:blogger.com,1999:blog-9124040207348733683.post-50962418292428491712010-04-01T10:07:00.003-04:002010-04-01T10:36:24.472-04:002nd Annual Chili Cook Off For CharityThis morning we found out that the wonderful people of Rite Aid Corporation (including Karly's grandfather Don, second cousin Jason, and godfather Mark) have decided the proceeds from their Annual Chili Cook Off For Charity will benefit 4Karly'sKause, and in turn, the National 4p- Support Group <a href="http://www.4p-supportgroup.org/">http://www.4p-supportgroup.org/</a>. We are very humbled that a great corporation like Rite Aid decided to support Karly and all of her friends. It's especially humbling this year considering our national gathering is coming up this July in Salt Lake City. There are many children and families that will directly benefit from this event and the money raised.<br /><br />For those of you that don't know, 4KarlysKause has been a way our family has brought awareness of WHS to others, as well as a way to raise a little bit of money for those affected by the syndrome. It started out as an idea (and a website) a few years ago and has become a "way of life" for all of those that know Karly. The spirit of 4KarlysKause is always alive... even if the website is not updated! (That is why we use the Karly's World blog!!!) Since the inception, we have raised hundreds of dollars that has helped support the National 4p- Support Group and local charities such as United Cerebral Palsy of Central PA <a href="http://www.ucp.org/ucp_local.cfm/132">http://www.ucp.org/ucp_local.cfm/132</a>. Examples of support include:<br /><br /><ul><li>4KarlysKause has sponsored a hospitality suite at the last national gathering that allowed families from all over the country a place to meet and share stores about their children. Sometimes just having a place to talk with others that understand your struggles is the best therapy. </li><li>4KarlysKause has provided support to projects spearheaded by UCP of Central PA such as the Adventure Zone Playground, an accessible playground that allows all children, regardless of their ability, to play side by side. <a href="http://www.adventurezoneplayground.com/index.php">http://www.adventurezoneplayground.com/index.php</a>. This by far is Karly's favorite playground, and we frequent it at least once a week. </li></ul><p>Thank you very much Rite Aid Corporation, and employees, for supporting, Karly, her friends, and everyone involved with Wolf Hirschhorn Syndrome. Your support is amazing and inspirational. </p><p>Enjoy the Chili!!!!!</p>Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com0tag:blogger.com,1999:blog-9124040207348733683.post-37627188808285220342010-03-22T12:07:00.007-04:002010-03-22T12:32:05.702-04:00Busy Days...And Make a Wish Update!<div align="left">Since the weather has finally broke we have been spending a lot of time outdoors. We visited the park again and had a blast. It is so adorable to see my kids play so well together. Ethan is such an understanding and patient little guy. Some days he has more patience then me. </div><div align="center"><br /></div><div align="center"><img id="BLOGGER_PHOTO_ID_5451492160620041346" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbq_q3j6yu_qRvpG7gUmz2GSjDn0kLpv31nE-Ma0Z2DDHPFlVBP9RtxKJ6erf8Nd7_zeBtIGLHIWeiONfaksgTXF7EIAL6cIgttz7pnjZTHqQxqr8hM0o2ln2EsOEtNAuGS19DrZjTZXI/s320/Karly+pink+outfit.JPG" border="0" /></div><div align="center">Another day at the park! Happy as can be...</div><div align="left"><br />Last Thursday night, we met with the Make A Wish coordinators. They came over after dinner and were there for about an hour and a half. They were the most wonderful ladies, Peggy and Ellen. They came bearing gifts for both kids, balls for Karly and candy for Ethan. Karly took to both of them immediately. The best part was that they paid just as much attention to Ethan as they did to her. He was very excited that they wanted to hear what he had to say too. So we made our wish... Disney World. They had Ethan speak for Karly since she can't talk yet. It was so cute to hear him describe why he thought she would want to go to Disney. They took our wish and all of our information so hopefully we will hear from them soon. We requested a trip either in May or wait until September. Karly wouldn't be able to bear the hot summer in Florida. She does not process heat well, so vacation wouldn't be much fun if we were constantly worried about her seizure activity and body temperature. We are very excited about the potential of the a vacation to Disney. We will keep you all posted! </div><div align="center"> </div><div align="left">The rest of our days have been filled with other activities that have been keeping us busy. This is our last week of freedom before spring sports start for Ethan. Last night we all went to a Hershey Bears game. Ethan had a blast and Karly did not. She was not into having to sit still and not kick the people in front of her. She only lasted one period then I took her down to the concession area and we walked around, had ice cream and just killed some time. After the game they invited the fans onto the ice for an autograph session. Ethan was so excited. I stood in line for an hour and half so he could get his autographs but it is so worth it to see the excitement on his face. </div><div align="center"> </div><img id="BLOGGER_PHOTO_ID_5451494412744226514" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZqfegZraXS31mng7dm928qDPc7mP6BIGvcZ3hMbmVXtSxz59nlfCF9gIgiT-4eIPXxQtJRGAMrjxEsX24N2_gHfFKA_LQc0XOuH_25vpkhmjd0zOp9k-QtZIQfbFicdAjKobHOCzpsqU/s320/ethan+bears+game.jpg" border="0" /> <p align="center">Ethan met this favorite Hershey Bears player last night. Autograph and all...<br /></p><p align="left"></p>Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com3tag:blogger.com,1999:blog-9124040207348733683.post-12400528096120095712010-03-13T15:13:00.003-05:002010-03-13T15:15:26.351-05:00Join our Team!!!!<a href="http://ucpfoundcentralpa.dojiggy.com/Karlys">http://ucpfoundcentralpa.dojiggy.com/Karlys</a><br /><br />Join our team for the Highmark Walk for a Healthy Community Walk for UCP of Central PA. Our team name is Karlys Team.<br /><br />Hope you can join us and help us be the top fundraising team for UCP this year. It's always a great time; come out and walk with us.<br /><br />Love, The Shellenberger FamilyJennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com0tag:blogger.com,1999:blog-9124040207348733683.post-12633559910187462622010-03-11T20:37:00.004-05:002010-03-11T20:57:31.431-05:00Our favorite Park!It's finally starting to get warm!!!! We are so excited for many reasons, mainly we can get outside and play. Great for the kids and great for mom and dad too. There is a park that is about 3 miles from our house, wish is was walking distance but too many really busy streets to get there. The park was built last year and it's called Adventure Zone playground. The best part of it is that it is 100% handicap accessible. It's SO AMAZING!!! Karly can go on all the play equipment. Her jogging stroller can go to the very top, it's great. This playground was built with donations from the public, the land was donated by a church and 100's of volunteers to do the construction. Both of our kids love the park, they each have a fence post with their name on it and every time we are there we have to go find it. Once school is out we will go there for dinner at night. We pack a picnic and have a family dinner there and then the kids can play for hours. (Sometimes we are lucky enough to have a joint family dinner with the Weinstocks, our great friends!) Here are some pictures from our first day at the park this year....<br /><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeSnUkfEUgjnOEemy8VGmz9NAmax0yOMslIYpuaKbjJa1dq1tjucBxL2fQ0I47Ai1aRq3QsqDWzPFReme8ji861DgZ-PIaBKiJjwCe12PWFaJvV0Nt0kJO3MgjF6VbKEZYcHCKgi3-Ovw/s1600-h/100_3131.jpg"><img id="BLOGGER_PHOTO_ID_5447558592414861986" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeSnUkfEUgjnOEemy8VGmz9NAmax0yOMslIYpuaKbjJa1dq1tjucBxL2fQ0I47Ai1aRq3QsqDWzPFReme8ji861DgZ-PIaBKiJjwCe12PWFaJvV0Nt0kJO3MgjF6VbKEZYcHCKgi3-Ovw/s320/100_3131.jpg" border="0" /></a> She LOVES the swings!!!<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBBABE-bkWLES4AoCAmCYb9CPJYp3pnv88AOtOFt6ld7QDrvWP11opET1SjIHNNOvac4p9guK5CTyOhTWigJ1d8iTuwhSg_NErh1ytx06sbN5gIlsAhyphenhyphentdh6olL3feGXz-EW7idQWf_Kc/s1600-h/100_3149.jpg"><img id="BLOGGER_PHOTO_ID_5447558585747803762" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBBABE-bkWLES4AoCAmCYb9CPJYp3pnv88AOtOFt6ld7QDrvWP11opET1SjIHNNOvac4p9guK5CTyOhTWigJ1d8iTuwhSg_NErh1ytx06sbN5gIlsAhyphenhyphentdh6olL3feGXz-EW7idQWf_Kc/s320/100_3149.jpg" border="0" /></a>Look at Karly standing...and she didn't even notice..<br />she was too busy playing with her big brother<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi7fWBUGhYdGkFae7Tx22lIB4KG8l6HmX2rRuMARHQH7mrO80L5929MZ61pt0SSyxMT60wlnbHdEYd4yjJd-AwfAyUD52do9P8YBFXs1PJbHL9hkxMot35ZGfs5FLOD8Nf0uACRNXX31E/s1600-h/100_3132.jpg"><img id="BLOGGER_PHOTO_ID_5447558578606487506" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi7fWBUGhYdGkFae7Tx22lIB4KG8l6HmX2rRuMARHQH7mrO80L5929MZ61pt0SSyxMT60wlnbHdEYd4yjJd-AwfAyUD52do9P8YBFXs1PJbHL9hkxMot35ZGfs5FLOD8Nf0uACRNXX31E/s320/100_3132.jpg" border="0" /></a><br />Happy as can be...<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8kF4Cj5T-PG8SK-lnO7M8hr0E8pxKGGzmuZFO7bIJ1a0uv4VqJoshZ-RzPSjnlyVFAz1sYmsbT2JD2PodTLj7qFgWkDqPTwMtoMQm3yZUzUpuO2TR3iXJrBwLSiT_Xvr1pgg8Xo8Hmdg/s1600-h/100_3128.jpg"><img id="BLOGGER_PHOTO_ID_5447558577044786498" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8kF4Cj5T-PG8SK-lnO7M8hr0E8pxKGGzmuZFO7bIJ1a0uv4VqJoshZ-RzPSjnlyVFAz1sYmsbT2JD2PodTLj7qFgWkDqPTwMtoMQm3yZUzUpuO2TR3iXJrBwLSiT_Xvr1pgg8Xo8Hmdg/s320/100_3128.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj28CiCnyYwDPFkzOaxx8FUM3VVIaOUs7AemIDSNJqMOcaAKLVO4-1qWcH9u70KLWyahYxP0VClU8-X9U-vqw-5zpsG949x83ZEl7RqGwOOq7AycNNmfmtwpXjaCJkbTSq1grChShL8E04/s1600-h/100_3124.jpg"><img id="BLOGGER_PHOTO_ID_5447557555792156754" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj28CiCnyYwDPFkzOaxx8FUM3VVIaOUs7AemIDSNJqMOcaAKLVO4-1qWcH9u70KLWyahYxP0VClU8-X9U-vqw-5zpsG949x83ZEl7RqGwOOq7AycNNmfmtwpXjaCJkbTSq1grChShL8E04/s320/100_3124.jpg" border="0" /></a><br />We are looking forward to many more nights at our favorite park.<br /><br /><br /><div></div></div></div></div><br /></div>Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com3tag:blogger.com,1999:blog-9124040207348733683.post-18667415826143657362010-02-25T13:06:00.001-05:002010-02-26T08:38:01.736-05:00"To blessed to be stressed"I just finished up at my company's annual sales kickoff and listened to the best motivational speaker. In the past few years, I have listened to many motivational speakers. Many were so into <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">themselves</span> and whatever book they were selling and you can see it right away. Others you get some ideas from them but never really blow you away. This guy today blew me away...his name was Jon Gordan. He message was very simple and well presented.<br /><br />I must say I was not the least bit interested in sitting through one more speaker. According to the weather reports there was a blizzard coming (however now riding home on the bus...I see no snow). Anyway I just wanted to get the day's meetings over and get home. Five minutes into his speech I was completely engaged. I was scribbling down notes and taking it all in. He spoke from the heart and I believed every minute of it.<br /><br />The message that hit home the most was when he said "to blessed to be stressed." Such as simple statement but how powerful! It amazing how much this just stopped me in my tracks. I think of all the times in a day that I'm stressed. (Lately it's been a lot) If in those times I would just stop and think about all the wonderful blessings in my life and not the stressful situations imagine how much happier I would be. Caring for a child with special needs can sometimes just overwhelm you with stress. But I am the luckiest person in the world to be Karly and Ethan's mom. I thank God every day that I have such wonderful children. With Karly every little accomplishment is huge for her and we should slow down our lives just a bit to see how her life is truly a gift. I know from this day forward I will make an effort to live by the saying "To blessed to be stressed." It won't be easy but I am going to give it all I got.Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com1tag:blogger.com,1999:blog-9124040207348733683.post-2108827928958270852010-02-15T17:18:00.006-05:002010-02-15T17:56:44.433-05:00Day at the doctor and dentistSomeone please tell me why I thought taking Karly to the dentist for a 7:45 am appointment was a good idea?<br /><br />For some reason I thought taking her at 7:45 am would be great that way I could get in two appointments today without a problem. Great in theory but not great in reality, we were rushing out the door to get to the dentist. We made it with two minutes to spare (which in my crazy head is late.... I hate to be late for anything!) While rushing out the door I didn't think to take any of the paperwork that the dentist sent us and that I took my time filling out with every detail. Nope, forgot it! Since I knew we had to be at the next appointment by 9:15 am I flew threw the form (replacement form) and missed a ton of information. I felt so bad but I didn't want to hold up her appointment.<br /><br />So we were called into the room and it was so cute. I have never been to a pediatric dentist office before. All the exam chairs were kid sized and it was so warm and welcoming. Not how I remember my dentist office. Anyway Karly was greeted by the nicest dental assistant. She explained everything and asked all kinds of questions. It was great. I was already blown away by the staff and the office. The dentist came in and he was very nice, very friendly. He examined her teeth and she just laid there with her mouth open. So calm and still!!! Not sure who took my child at this moment and replaced her with a calm one but she did it.<br /><br />As a parent of a child that has many doctors appointment you get used to all kinds of doctors, the nice ones but don't really seem to care, the ones who are just cold and don't care, all kinds. By this point I am <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">completely</span> sold on this office and dentist, and then they blew me away........HE ACTUALLY DID RESEARCH ON HER CONDITION BEFORE WE CAME IN. The dentist!!!! <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">Unbelievable</span>! I can't get her pediatrician to do research on her condition but the dentist did! I was so impressed. In fact I am switching Ethan to them as well. <br /><br /><span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">OK</span> first appointment down, one to go. Her next appointment was at Hershey Medical Center with her <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">geneticist</span>, Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Ladda</span>. He has always been my favorite doctor of Karly's. When she was diagnosed, he was the only one who gave us any hope. He was also the only one who had ever heard of <span class="blsp-spelling-error" id="SPELLING_ERROR_5">WHS</span>. I was really looking forward to this appointment. I love that we can ask him questions about any part of her health because is truly the main doctor for her diagnosis. Genetics!<br /><br />We had no issues getting in, we got their on time (I mean 10 minutes early) and only waited for a few minutes which was nice so we could see some of the nurses who have cared for Karly in the past. As usual at Hershey, we saw a medical student first which we are used to and expect since it is a teaching hospital. He was very nice and listened to our list of questions. Then we got to meet with Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Ladda</span>, the genetics <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">counselor</span> and the med. student. We probably spent 45 minutes to an hour with them. Just talking about how she is doing and what we see and our concerns. I LOVE IT!! I never say that about appointments but he is just so good. He came in and just says how normal she looks. To him she doesn't have the label that she has everywhere else. It is so refreshing. I think he has a soft spot for Miss Karly too, as most people do. As we left there I just feel refreshed too and ready to take on the world and issues that come along with her condition.Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com4tag:blogger.com,1999:blog-9124040207348733683.post-61044653143676107482010-02-11T10:11:00.005-05:002010-02-11T10:45:47.681-05:00Photo diary of our snowed in day!Good Morning...Ethan and Karly snuggling...no school today.<br /><img id="BLOGGER_PHOTO_ID_5437005601638110226" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 242px; CURSOR: hand; HEIGHT: 220px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglINUccTlGFDoK35Dpux0_XQlHPE8wUPTjvo630S-Z53hgcrEu05gJBQtHQPV5iUmNZzSHsU51EHKGAkikr66RDAwY02doijyQ2DA37s5nZhwlxmbZ2sPv39V-3qHaNsyBMY19LMctT6M/s320/105_3032.jpg" border="0" />Time for breakfast... Karly shows off her new skills...feeding herself and...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHkRYOrVlRNrflx3cLFX3qsTekYJB7Gw0YQ0Ax7xIPeJNeReOiVY4qTLQ7_4QMhPj0r6cvAC1Oyv3voQDxK63bFmEOsYDNs6ValQNGdEpxxtRUU8Bi_NzthsAcdfWlNistoHUVcKocoEc/s1600-h/105_3039.jpg"><img id="BLOGGER_PHOTO_ID_5437010599383879842" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 185px; CURSOR: hand; HEIGHT: 249px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHkRYOrVlRNrflx3cLFX3qsTekYJB7Gw0YQ0Ax7xIPeJNeReOiVY4qTLQ7_4QMhPj0r6cvAC1Oyv3voQDxK63bFmEOsYDNs6ValQNGdEpxxtRUU8Bi_NzthsAcdfWlNistoHUVcKocoEc/s320/105_3039.jpg" border="0" /></a>Holding her own cup!!!<img id="BLOGGER_PHOTO_ID_5437010592295850242" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 191px; CURSOR: hand; HEIGHT: 268px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqdHsFk0TNj9Ih9yy0QNr-0IkYpstrOWcRHXebzlTg4mCudQqtPefJXT7vF8_AHdbyBx4kQFm-pRvFRJZsCwhRdd69W1JSyDybNRpLSfxUr8pGD5RPlkpRWQtW-Jh2AzHR-hzVIc46UgI/s320/105_3038.jpg" border="0" />What else is there to do when snowed in....we baked cookies...well Ethan and I did...Karly cleaned out the cabinets for us...<img id="BLOGGER_PHOTO_ID_5437007457591055186" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 220px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9xrZlZ9ANT3ji7vZR8sCZXVuK341k1bjJjA4EkQNJx-W8O11GzBTx6J9U0FXTOhhEVAq7sCaKOPhQwB9x_xiNhUwhmzaYJ1yGHptE1NI8ILp_UvkBAn0fPd7aekfrjsnR0uEpbIM1Xak/s320/100_3042.jpg" border="0" /><img id="BLOGGER_PHOTO_ID_5437007448616262146" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 210px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2RQEgLKNt4_r2c1NMEIQWvGuDEh52hZ1kYnpAZjisagwL83B1TebqGxNmnHqdebM81wmcT0_-3OfEc1Z6N9YYuUxy6rrQJc0-eJJ6jqbmC4jLarms9z3fVcaY_jwU4goxpGVog8UdmnY/s320/100_3044.jpg" border="0" />Lunch time...look at me holding a fork...now if I'd only use it to eat <img id="BLOGGER_PHOTO_ID_5437010583105464178" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 256px; CURSOR: hand; HEIGHT: 211px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVDEmtnPbelov35i0lTJolG8-jCvzQCWVd76AXez3NexHB23poeDNFW6FVc_Q4wYCGnvAM_kXxBMj64CG4Jjiied_Io2kPZSZGFF_ZfX3Ifp4cCmm_pavBar5dUk8Dbq7IeSxWvAwT_uE/s320/100_3047.jpg" border="0" />Mommy's big helper, well not so much help but she looks so cute tearing out all the laundry I was trying to fold. <img id="BLOGGER_PHOTO_ID_5437008653891091778" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 282px; CURSOR: hand; HEIGHT: 238px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGLRqRjUweA63qgSXoeny0bYRKwzzOkxn2pcWvzZ8O9LonPhO4w-xF388QZbvZfU7s4J_v8FKHzvWBjmCwaBUdnMykamBhyLlwACUHn-UZYnznQzWEYWCarJagAM4Nh-BS8b2KS47xk84/s320/100_3061.jpg" border="0" /><img id="BLOGGER_PHOTO_ID_5437008646554309186" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 238px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRIXWTRQXSg8XkeFrUfZJ0JwWupxqGpnIw0IRcP34UwjrI7nMljx-PuWmq6WRPqZy04OosfjKlF2Bvq6_EpEYdmJc6lfH9Eazc62l_aNiI9EjQpsvPxC5nIATPkfkxz8_lTvh4-glSWoo/s320/100_3062.jpg" border="0" /><img id="BLOGGER_PHOTO_ID_5437007436407681922" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 244px; CURSOR: hand; HEIGHT: 237px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjh3nUjHYMQDGr3zvxqj2j_NVg15XWrhuwp7QzlAMCzz6TrovdjDApwQktrlvUpgPT9FjDg9JdNEvF9xUxdFtit1G3Sqhyphenhyphen_6sS_hSXPdU-j0S_jI3G5td2Q2CuKDSHGhIKB5Tsn6Bh4TY/s320/100_3058.jpg" border="0" /><br /><div> Hopefully we won't be snowed in for too much longer...the kids are getting major cabin fever!<br /><br /><div></div></div>Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com2tag:blogger.com,1999:blog-9124040207348733683.post-83922513108732461532010-02-08T18:52:00.001-05:002010-02-08T19:36:02.310-05:00Don't mess with WHS mamas (and Dads too)!This past weekend a mom of a WHS kid stumbled upon a video that was posted on YouTube by Capstone College of Nursing at the Univ. of Alabama. This video was intended to be an educational video created by students about genetic disorders. They used a sleepover story telling scene and described our children with WHS as creatures that were cursed by a witch causing all these horrible physical features. Just typing that doesn't even get close to how horrible this video was. I say "was" because within the first hour so many of us WHS parents complained that it was removed. Thank goodness. All I could imagine is a newly diagnosed parent searching the Internet and finding this horrible video.<br /><br />What the creators of this video didn't realize is that the WHS parents are a tight group. We talk though Facebook, blogs, a Listserv, etc. We have rallied together and got the video removed and also have flooded the Dean of the College's office with calls today.<br /><br />I was horrified by this video that I too called the Dean's office. I was pleasantly surprised that I received a return call from the Dean herself. I spoke to her for several minutes and she personally apologized and promised that this matter would be handled promptly.<br /><br />As much as a was VERY upset about the video, I was very happy to have the ear of the Dean to express my feelings and explain how hurt we were as parents that nursing students could view children this way. These are the same people that we trust our children with for care.<br /><br />What this whole experience has shown me is that we have an absolutely wonderful group of parents and we will fight for our children. Our kids are kids too, they may have a diagnosis but they are kids too. All of them adorable, beautiful children. I hope the students of this class and their faculty learn a life lesson from this situation. I know they will never post an offensive video about our children again. I plan to send a thank you note to the dean thanking her for her prompt response and true understanding of the situation. Along with that a picture of my princess to show the class how she is not a "creature" as depicted in the video but a regular kid. (Very cute regular kid!)<br /><br />WHS parents, You guys are awesome and I'm so proud of each and everyone of us for fighting for our kids. Love ya all!Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com5tag:blogger.com,1999:blog-9124040207348733683.post-8138810705072511862010-02-05T19:11:00.003-05:002010-02-05T19:23:15.832-05:00The best of friends!There are lots of people who are in my life everyday. Some of them try understand what having a special needs kid is all about but don't really understand, some of them pretend that I don't have one and then there are my friends who absolutely get it and get how it affects me. I have my friends who have other kids with <span class="blsp-spelling-error" id="SPELLING_ERROR_0">WHS</span> and of course they understand and I love them for it. But the ones who are extra special are the ones who don't have special needs kids and still get it. They are the ones who let me vent, not really about anything in particular but they just listen. They do the little things for me that mean so much and they probably have no clue much they mean. (Until they read this) Today more than anything I needed some quiet time to do NOTHING!! I get it about once a year and sometimes just really need it. One of these special friends gave me that and it's the best gift. Of course because I'm a crazy nut, I spent half an hour on the sofa and then starting cleaning the basement. But that short amount of down time is sometimes all I need to get all my stress in check and continue with the day. Some days I want to run for the hills screaming and other days I can take it like the best of them. Today I was on the verge of running :)<br /><br />I just wanted to take this post to says thanks to those extra special friends. You guys know who you are and I LOVE YOU ALL! Thank you for all that you do for me and for Karly.Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com0tag:blogger.com,1999:blog-9124040207348733683.post-56882592076851072802010-02-01T11:27:00.002-05:002010-02-03T13:43:47.984-05:00Miss Personality!Wow Miss Karly is showing off her personality. She is such a ham! Every place we went this weekend that girl was getting <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">everyone's</span> attention. Friday night at dinner she had the attention of the restaurant owner as she usually does. He loves Karly. She gets special treatment and lollipops from him.<br /><br />Saturday and Sunday at Ethan's games she was so funny. She was screeching and clapping to get <span class="blsp-spelling-error" id="SPELLING_ERROR_1">everyone's</span> attention. She was all smiles and she was sporting her brand new hot pink Converse high tops. It was so cute to see her interaction with people.<br /><br /><br />She seems to be adjusting well to her new medicine. No reactions so far!!! Although her appetite is insane. That girl can put down so much food. She ate more this weekend then I've ever seen before. I wonder if her new meds have an effect on this. Her Topamax is supposed to be an appetite suppressent so if the Keppra increases her appetite and she goes off Topamax, look out the girl is going to eat us out of house and home.Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com1tag:blogger.com,1999:blog-9124040207348733683.post-19668111874268330852010-01-27T19:02:00.003-05:002010-01-27T19:20:37.587-05:00Today was a good day...Every morning Karly and I rush off usually 5 minutes late, which drives me crazy. I usually run in and drop her off and rush back out the door. The nurses always ask... anything new today with Karly. My typical answer is nope and head out.<br /><br />Today was different because today she started a new seizure medicine and it has me stressed out. Not because of the drug itself but Karly has had many reactions to different seizure medicines and none of them have been good. So this morning they asked the usual question and I went into to detail about the new drug and my concerns. They (her nurses) are so awesome, they listened to everything I said and wrote down all the information.<br /><br />This is why I LOVE Pediatria. She goes here Monday through Friday and is cared for by the most loving nurses and aides. I could not ask for any more. This afternoon when I picked her up they gave me a full report on how every hour they did a full check for any new rashes, they closely monitored her food and drink intake for the day and just overall gave her a little extra attention today. They new I was concerned and took my concerns are seriously as I would.<br />Best part...nothing happened...no rashes, no mood changes, no nothing. <br /><br />So that was a good part of my day but the best part is that I got a call today from her health insurance and they re-evaluated her attendance at Pediatria (<a href="http://www.pediatriakids.com/">http://www.pediatriakids.com/</a>) and they approved her attendance for the next year!!!! This is so awesome because I fought for months to get her in last year and this year was so simple.<br /><br />ALSO... Today I received a call from the Make A Wish Foundation and they are starting the process to see if Karly qualifies for a wish. So exciting!Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com1tag:blogger.com,1999:blog-9124040207348733683.post-51843199966109733682010-01-24T22:22:00.007-05:002010-01-24T22:56:12.485-05:00Karly's Neuro Appt<div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf5C_D89OqcZbPz_VqZVLFhEQYz4f5fMbcoVVJPyh5FtVjC_Jjb4Sb_L9uUGdbsUH8VSOoLRaiqVh7KzfzMkODmLxTy-32BbH19zmMEUz-jvT4gKeIRgtcj0Qy0Orqzzm7fB692VYdv9g/s1600-h/karly+and+izzy.jpg"><img id="BLOGGER_PHOTO_ID_5430520094444548674" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf5C_D89OqcZbPz_VqZVLFhEQYz4f5fMbcoVVJPyh5FtVjC_Jjb4Sb_L9uUGdbsUH8VSOoLRaiqVh7KzfzMkODmLxTy-32BbH19zmMEUz-jvT4gKeIRgtcj0Qy0Orqzzm7fB692VYdv9g/s320/karly+and+izzy.jpg" border="0" /></a> Karly and Izzy at the WHS gathering</div><div align="center"><br /></div><div align="left">Karly visited the neurologist on Friday and had a good visit. We spent quite a long time with the doctor and reviewed her medicine and her seizures. We as a group we have decided to change her seizure medicine to <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Keppra</span> and take her off <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Topamax</span>. It will take 10 weeks until she if fully changed for one medication to the other. Many of the <span class="blsp-spelling-error" id="SPELLING_ERROR_2">WHS</span> kids are on <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Keppra</span> and seem to do really well on it. We are all hoping that this will reduce the number of breakthrough seizures that she has. Cross your fingers because I can't take anymore seizures...too many lately.<br /><br />Yesterday Karly, Daddy, and Ethan went to friends of ours to visit with other <span class="blsp-spelling-error" id="SPELLING_ERROR_4">WHS</span> families. They had a great time catching up with other families and sharing stories. Karly and Ethan had a great time. It is so wonderful that we are <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">fortunate</span> that <span class="blsp-spelling-error" id="SPELLING_ERROR_6">WHS</span> families nearby. It so awesome to be able to share stories and see the others kids. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">Unfortunately</span> my kids shared their sickness with me and I had to miss the party which made me very sad. Hopefully next time, sounds like we will get together in the spring.</div><div align="left"><br /></div><div align="left"></div>Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com1tag:blogger.com,1999:blog-9124040207348733683.post-44627964161612785332010-01-21T21:38:00.006-05:002010-01-25T12:13:52.306-05:00Welcome...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGkfpC5mJx5KHbmqfP445V8nrKnEAq9o0n8rasqSyMbi2qccJL1wJjV13wUH_pD7VbHFxYXS1-a53S2cZDoZkFyROiijpU22jeH33qJ45UHYh1BRuoLInicoEEo0wHgVhecLL2AJOAsgg/s1600-h/e+and+k.bmp"><img id="BLOGGER_PHOTO_ID_5429392395519158562" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 130px; CURSOR: hand; HEIGHT: 130px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGkfpC5mJx5KHbmqfP445V8nrKnEAq9o0n8rasqSyMbi2qccJL1wJjV13wUH_pD7VbHFxYXS1-a53S2cZDoZkFyROiijpU22jeH33qJ45UHYh1BRuoLInicoEEo0wHgVhecLL2AJOAsgg/s320/e+and+k.bmp" border="0" /></a><br /><div>So after months of not posting on Karly's website...I have decided to try to blog. So here goes...Karly's World is appropriate name for this blog because most days it's her world and we just live in it. Karly is our 4 year beautiful, crazy curly blonde hair little girl. She is such a joy and she loves life. At the age of one she was diagnosed with Wolf-Hirschhorn Syndrome (WHS or 4P-). It is an extremely rare chromosome disorder, the quick and dirty is that she is missing a piece of her fourth chromosome. This causes different things in different kiddos, for Karly she is mentally and physically delayed. She is very small for her age but big for a WHS kid. She does not walk or talk yet but she has learned to pull to stand by herself (Woo Hoo!). Unfortunately she does have seizures (they stink!) as a lot of kids with WHS do. Lately they have been increasing and getting on my nerves. Overall health wise she is pretty healthy, no major issues other than the seizures.<br /><br />She attends the intermediate-unit pre-school 3 days a week for half a day. She has a great group of teachers there. She also attends a medical daycare during the week while we work. It is a WONDERFUL place for her, she many great friends there with all types of disabilities. She is cared for by nurses all day and it is such a stress relief for me as her mom to know she has the care she needs. One of her favorite activities is to rides horses...yep, that's right...she rides horses. She takes riding lessons at a place called Capital Area Therapeutic Riding Association (CATRA). They specialize in riding for special needs kids. They are great.<br /><br />Karly is very lucky to have a great big brother Ethan. He is 8 years old and involved in everything. As a family we are on the run a lot for his sporting events. Karly tags along to all of them as well. She has become quite the little cheerleader for her brother. He is such a great brother; he is the first to help her with anything she needs and is always looking out for her. Overall just a great kid!<br /><br />Well first blog done...let's see if I can keep this going. I look forward to keeping you all updated with her appointments and new achievements. </div>Jennhttp://www.blogger.com/profile/02161151008210964680noreply@blogger.com3