Friday, March 14, 2014

Celebrating World Down Syndrome Day 2014

First off I HAVE to share this video with everyone who knows Chloe or knows OF Chloe.  It made me cry and I think it’s amazing!

So this blog post will be dedicated to Chloe and her biggest cheerleaders Xander and Sadie, in honor of WDSD which takes place on March 21st every year.  Get it???? 3/21. . . . wait for it. . .  Trisomy 21 the official medical term for Down syndrome.  I know, cute right?  Anyway, let’s talk kids.  Mine, of course, cause it’s my blog (hee hee).  I haven’t done a general update in awhile so here goes:

CHLOE has been a busy little beaver.  Which in turn means so have the rest of us!  But what else is new!  I was shocked at my most recent teacher meeting when she showed me the book Chloe was reading.  Yes, I said it R-E-A-D-I-N-G!  Not “reading” like I thought, where she points her fingers at words and talks along in gibberish as she goes, but actual word recognition reading!  wooo hooooo!  Now that’s a milestone I wasn’t even quite expecting yet.  What a pleasant surprise.  She’s also talking in FULL, sometimes long sentences!  Not always, but every now and then she comes out with a wowzer!  Like “Mom, can you stop doing that?!”  (probably when I’m singing or dancing).  She’s got a new i-Pad that we’ll be using to help her communicate because although she can speak in full sentences at times, at other times the words just escape her and frustration bleeds into her sweet little eyes.    Chloe’s also toilet training and has been for what seems like months!  She’s so darn close.  Close, but yet so far. . .  Chloe loves to sing and dance with Sadie, play floor hockey with Xander, watch movies and act them out, play with her Playmobil people and her cars.  She is full of spunk and zest, but a full on love.  I find if I’m getting frustrated with her if I can get her to laugh, we’ll all be okay!  Lastly, she’s been busy doing gymnastics (or should I say Max her shadow has been busy chasing her during gymnastics!)  I think that covers Chloe in a nut shell.  Oh, I forgot the medical update. . . we’re trying to wean her off her thyroid meds and heart meds and could potentially have her MED FREE by the end of April.  I get VERY emotional when I think about this as it seem like the end of a very medically dominated era.  I’ll keep y’all posted.

AND as if all this isn’t enough, Chloe has taken to RUNNING out of the house.  We’ve gone into lock down, but mistakes happen and she has gotten out and gone missing, although only briefly, several times.  One time she was seen bolting out into our busy street without even glancing for cars or hesitating.  We were sooooo lucky!!!!  We will be putting this in the forefront now that the warm weather is returning and will be working with our local police department to get her hooked up with Project Lifesaver, a tracking program for people with disabilities.  We’re also working with the Department of Disability Services and the school to come up with some behavior plans to help prevent bolting.  It’s a very scary prospect!

SADIE SADIE SADIE.  What can one say about Sadie.  The poor middle child, sandwiched between two very high maintenance siblings.  And a drama queen in her own right.  Well, she’s been struggling a little with her place and has expressed the feelings of being left out so we’ve made a real effort to give her some special extra attention, her school is hooking her up with a mentor and I’m enrolling her in a program called SibShops, just for siblings of kids with disabilities.  She’s looking forward to both!  She’s also taking gymnastics with Chloe, doing well in school and growing like a weed!  She LOVES to play school, experiment, dance and be silly and do “fashion”.  I fear the day when we can fit in the same clothes!  Although I guess that means I get to steal from her closet too ;)  Sadie’s had two bouts of strep but otherwise is healthy.  No specialists for her.  She is such a great sister to both Chloe and Xander. 

XANDER MAN!  Last but not least.  He’s 13.  Yes, 5 years from 18. . . 3 years from being able to drive.  1 ½ years from high school.  And I know all this because he’s been sure to point it out to me!  He loves toying with me and reminding me he is growing up!  AND  UP AND UP.  Every week he likes to point out how far above my head he’s gotten.  Last count 5’5” and growing.  He’s a beanpole though.  95lbs soaking wet.  He’s definitely working to find himself out, but he, like his other sibs, is a strong part of the family.  He’s working VERY hard in school and hockey and LOVES playing video games.  He’s still interested in medicine (has been since he was 2), but also takes some interest in the military.  He’s a family guy for sure, heading down to VA to visit his Great Nana who he loves very much.

Stacey and I are doing well.  22 years together and 19 years married.  wowzers!  And still going strong.  He’s gearing up for the spring season at work and I’m about to take on an increased caseload at my job (hence the early WDSD post).  We’re ready for spring for sure!  It’s been a LONG and stressful winter.

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