Wednesday, May 20, 2015

Jacob - A Little Brother in the Truest Form

 Down Right Living: Life with Down syndromeI've been updating many of my blogs over the last several weeks, and it's given me an opportunity to walk down memory lane.  Some of those memories were filled with laughter.  Others with sadness and tears.  But the strongest vein of thought I felt throughout the months and years with Jacob thus far has been gratitude that Jacob is in our lives.

Yes,  my 4 1/2 year old is stubborn, devious, likes to dump things on the floors...or beds...or behind couches...you get the idea.  But he's also a lover, a giggler, a hugger, curious, sweet, devoted, and constantly trying to show love toward me.  He's wise beyond his years, and yet impulsive as a one-year-old.  And...Jacob is a little brother in the truest form of the term.

Jake is only 18 months younger than Courtney, but only half her size.  So, why is it, that every time she walks in the room, he either A) follows her around like a puppy dog   B) Tries (and usually succeeds)  to tackle her.  That little boy LOVES to hear his sister scream and/or squeal.  It's like his very existence depends on how loud Courtney yelps.

At times it's frustrating, and other times, I can't help but chuckle.  It's one of hundreds of little reminders for me that, although Jake has Down syndrome, he is more like the rest of us than he is different.


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Help us help others with Congenital Heart Defects. Donate NOW

Wednesday, May 13, 2015

Gemiini Update: Jacob's Speech is Progressing

This is my monthly post on Jacob's speech progression using Gemiini.

 Jacob on Mother's Day 2015Admittedly, we haven't been using Gemiini as often as I'd like.  Jake's older sister had heart surgery three weeks ago, so our focus was on her for much of April.  However, whenever possible, I would sit down with Jake and go over the videos.  Plus, they have an app that we've downloaded that Jake can click on without requiring me to log into their system to watch the videos.  I've caught him several time with his Ipad watching those videos and making the sounds and signs to the words.
 Jacob on Mother's Day 2015
I've seen a lot of progression in Jake these last several weeks.  He's progressed from using signs and a series of grunts to babbling with consonants, and even trying to use words.  This last week he pointed to an object and said "there!" (which sounded more like 'dehyr', but whose complaining?), and last night he was doing the da-da-da thing.  What a leap from absolute silence. 4 1/2 YEARS we've been trying to get Jacob so say SOMETHING, and now it's happening.  Is it bad to say there are days I want to shed tears of joy at this development?

 Jacob enjoying the springtime on Mother's DayThis morning we were on again.  He only managed to watch for 10 minutes, but he did all the signs, all of the sounds associated with the animals, and was attempting to say the words.  He'd either manage to say the beginning or the end, but not the entire word.  They're baby steps, but for me they are HUGE.  I have hope.  And there's nothing better in the world than having hope for your child and his ability to communicate.
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Thursday, May 7, 2015

We have an OFFICIAL logo!

Check out Downright Living.com

Look at it.  Isn't it pretty?  My heart flutters and a tear forms in the corner of my eye when I gaze upon the fantastical wonderfulness that is...our official logo.  It's been four years in the making.  We've talked about DRL, and we've promised that it will actually come to fruition.  But today we scream from the rooftops: "We are alive!!"  Ok, maybe this is all a bit extreme to some.  But for me, it's a pretty big deal.  

I've talked about Down Right Living becoming a non-profit organization for so long, but have made no steps to do so.  Yeah, part of it is because Jake has had a few issues. Then Elisha and her  heart issues.  But in spite of it all, I've decided to push DRL to the top of my priority list and earnestly begin fundraising to make it happen.  I even have a business/marketing plan (gasp!)  I know, right?

Be afraid...be very afraid. 

Until then, if you'd like to help us reach our goal, we have a couple options for you.  

1) Donate outright through GoFund Me.  Donate to Down Right Living. Help us become a non-profit!

2)  Buy our T-shirts...or tank tops...or sweatshirts...(you get the picture) from us.  You can check out the options here: http://www.cafepress.com/sassysips2?nocache=yes

Every little bit would be appreciated.  None of it goes into our pockets. It goes directly into making DRL a non-profit and paying forward to those other families touched by Down Syndrome.