tag:blogger.com,1999:blog-393393482842832392011-09-07T23:48:19.081-07:00My Heart's Outside My BodyMiss Madison Jessie Grover blessed us with her arrival on December 30th, 2008. Little did we know that life would never be the same. This is about our journey... the good times, the bad, the accomplishments, and the defeats. My heart will never be the same... it now resides outside my body.Stacyhttp://www.blogger.com/profile/14245162196257655045noreply@blogger.comBlogger11100tag:blogger.com,1999:blog-39339348284283239.post-19049081339424578232011-08-31T14:14:00.000-07:002011-08-31T14:14:16.197-07:00Prelude <br /><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">I used to Blog, and it was almost like therapy for me. I haven’t since March of 2010, shortly after my daughter was diagnosed with a rare chromosome disorder. I could make up excuses… like I didn’t have time, or I forgot, but they would be lies. I felt, and still do, that I can’t do our situation justice through my words. That somehow it’ll turn into a pity party or a place where I vent frustrations, fears, anxieties about the unknown… and you’ll miss the most important part… how truly amazing my daughter is. SHE IS AHHHmazing; please don’t forget that. As you read about our day-to-day and the challenges we face please don’t forget how much I love her and how blessed I feel that I was trusted to be her mom. I’m fairly confident (If I do my job right writing this blog) that you’ll fall in love with her too. <span style="mso-spacerun: yes;"> </span>I think I’ve finally worked up the courage to let the world in on our amazing journey <em><strong>once again</strong></em> (<a href="http://myheartsoutsidemybodydonotuse.blogspot.com/">click here</a> for archived blog) …..<o:p></o:p></span></div><br /><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;"><strong> Meet Madison (2.5yrs old):</strong> <o:p></o:p></span></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-AIgPDWQUS6w/Tl6fedwlMKI/AAAAAAAAACE/p7Dn1D8eiMA/s1600/MaddieWagonREDO.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-AIgPDWQUS6w/Tl6fedwlMKI/AAAAAAAAACE/p7Dn1D8eiMA/s320/MaddieWagonREDO.jpg" width="241" /></a></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;"><span style="mso-no-proof: yes;"><v:shapetype coordsize="21600,21600" filled="f" id="_x0000_t75" o:preferrelative="t" o:spt="75" path="m@4@5l@4@11@9@11@9@5xe" stroked="f"> <v:stroke joinstyle="miter"> <v:formulas> <v:f eqn="if lineDrawn pixelLineWidth 0"> <v:f eqn="sum @0 1 0"> <v:f eqn="sum 0 0 @1"> <v:f eqn="prod @2 1 2"> <v:f eqn="prod @3 21600 pixelWidth"> <v:f eqn="prod @3 21600 pixelHeight"> <v:f eqn="sum @0 0 1"> <v:f eqn="prod @6 1 2"> <v:f eqn="prod @7 21600 pixelWidth"> <v:f eqn="sum @8 21600 0"> <v:f eqn="prod @7 21600 pixelHeight"> <v:f eqn="sum @10 21600 0"> </v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:formulas> <v:path gradientshapeok="t" o:connecttype="rect" o:extrusionok="f"> <o:lock aspectratio="t" v:ext="edit"> </o:lock></v:path></v:stroke></v:shapetype></span><o:p></o:p></span></div><br /><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Maddie was diagnosed with partial trisomy of 5q when she was 14 months old. It’s very rare, but (thanks to the <a href="http://www.ucdmc.ucdavis.edu/mindinstitute/">MIND Istitute at UC Davis</a>, <a href="http://www.chromodisorder.org/CDO/">CDO</a>, and <a href="http://www.rarechromo.org/html/home.asp">Unique</a>) we were able to connect to a few families who have children with similar karotypes. Maddie spent the first year of her life in and out of the hospital for RSV, failure to thrive, GERD, and kidney infections. She is globally developmentally delayed but continues to exceed expectations. She's most affected by her duplication of the MEFC2 gene, which plays a significant role in motor skills and planning. Although she can’t walk yet, I believe with all my heart that she will some day! She can get around pretty good on her knees… and <b style="mso-bidi-font-weight: normal;">she is <i style="mso-bidi-font-style: normal;">constantly</i> moving!!!</b> She’s unique in how she acquires skills… what we think she’s mastered one day, she can struggle with the next. It’s like she knows how, but her brain has a hard time sending off those ‘instruction’ signals. We get to celebrate accomplishments over and over and I will never take a single one for granted. Her biggest strength is her speech….such a sweet voice. That and she has a great sense of humor. It doesn’t take much to get her to giggle or smile… when she does, the whole world lights up. <o:p></o:p></span></div><br /><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Her Likes: She loves books! Loves to Eat! Loves her babydolls! And she loves loves loves coconut M&M’s!<o:p></o:p></span></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/39339348284283239-1904908133942457823?l=myheartsoutsidemybody.blogspot.com' alt='' /></div>Stacyhttp://www.blogger.com/profile/14245162196257655045noreply@blogger.com5