We're Alive

 

Our absence from the blogosphere has caused some concern.  Beloved blog follower Mindi, the same Mindi from Aunt Leanne and the Blue Robe Incident (a post worth checking out if you haven't seen it), needed some assurance that we are alive and well.  Well Mindi, here you go - pictorial evidence that we're still around: 

We had a fantastic Thanksgiving trip that resulted in some unwanted souvenirs including congestion, sore throat, runny noses, coughing, aching, and debilitating fatigue.  No worries - we're starting to bounce back and we've got tons of photos and stories to share.  But these stories will have to wait because there's a shot of Nyquil and a nice warm bed beckoning me.  Stay tuned!

Special Delivery

Tonight the doorbell rang unexpectedly.  Travis opened it in time to hear the rumble of a big brown truck fading into the distance.  At his feet was a tiny little box.  Inside the box was the cutest little pair of pink spectacles this side of the Mason Dixon...

Things have been very busy around here and with the Thanksgiving holiday pending, they're about to get busier.  No worries - the camera is always close by so stay tuned! 

 

In the meantime, a very special thank you to everyone who purchased an autographed calendar to support GiGi's Playhouse.  There are still a few left, so act quickly if you want one!  Click here to learn more!

 

And one more note of thanks goes out to Patti, over at A Perfect Lily, who is helping us promote Dr. Kinder's Petition.  If you haven't signed it yet, click HERE to do so.  We are more than halfway there!  And if you have a few extra minutes, I would encourage you to read the comments the supporters are leaving at the bottom of the page.  I guarantee you will be moved.  

We're so excited...we're so excited!!!

It's been two and a half years in the making and the level of excitement in this house is palpable (especially since we have PT this afternoon).  In her trademark two-year-old perpetual state of defiance, any urging to "walk" has been met with a resounding "no!"  So since walk has become a four-letter word in our house, this morning, we decided we would "run" instead - and it WORKED! 





The absolute best moment of this whole video is the impromptu Jessie Spano freak out, "I'm so...scared!"   It couldn't have been any better if it were scripted (but I promise it wasn't).  Seriously, people, if you don't get this reference, you're not a child of the 80's!

We're so excited...we're so excited!!!!

The perfect Christmas gift for anyone on your list...

Back in May, we told you about our trip to Chicago for Leanne and Josie's photo shoot.  Leanne and Josie were selected to be featured in the GiGi's Playhouse 2013 calendar.  For those that don't know, GiGi's Playhouse is an international organization that provides resources, support, specialized education, and awareness to individuals with Down syndrome and the community.

 

In October, we went back to Chicago to participate in the GiGi's Playhouse 2013 Calendar Launch and Red Carpet Event.  It was Leanne and Josie's first promotional appearance since becoming pin-up girls:

 

It's a shame Leanne is so averse to being in the limelight:

 

It's obvious all of the attention makes her extremely uncomfortable:

It's going to be awhile before she learns to embrace her new found celebrity status:

Meanwhile Josie has already let the fame go to her head.  Here she is asleep on the job at her first promotional appearance.  Yawn!  She's so over it.

 

This sequence of photos just made me laugh.  Here are Travis and Josie waiting for their turn to go up on stage:

 

When we returned home, Leanne got right to work autographing calendars.  She sat and signed her name day and night...

And now you will have the opportunity to own your very own GiGi's Playhouse 2013 calendar personally autographed by Aunt Leanne!  Josie and Leanne are among numerous chromosomally enhanced beauties featured in this calendar, which was shot by famed photographer Thomas Balsamo. 

For $20 (price includes shipping costs), you can have your very own autographed, 10 year anniversary edition of the GiGi's Playhouse calendar featuring Leanne and Josie.  All proceeds go directly to GiGi's Playhouse to support their mission to increase positive awareness of individuals with Down syndrome.

 

Act now - supplies are limited!

 

Head on over to our PayPal store to reserve yours today!

 

Merryn's impersonation of her sassy sister

In the spirit of true sibling rivalry, Josie isn't above doing an unflattering imitation of her little sister.  It involves putting her fists up to her eyes and exclaiming "Wah Wah!"  If you haven't seen it, click HERE. 

 

Well Josie, it was only a matter of time before Merryn returned the favor.  Merryn's impersonation of Josie involves...drum roll please..."The Face":

Of course Merryn's "attitude face" conveys more humor than sass because the kid has the hardest time stifling a smile!

 

In other fun news around here, Josie is making significant gains in her well-documented aversion to standing and walking!  The same tactic we are using to motivate Josie to overcome her struggles with eating is also helping in the gross motor department - music!  It's finally starting to set in that her repertoire of dance moves can really expand if she isn't sitting down!  Her balance is still a little shaky and her gait is still a little awkward, but we are so proud of her progress!

Just when we thought she couldn't get any cuter...

Recently, Josie's right eye has started to turn inward when she tries to focus on something in front of her.  We took her to the pediatric opthamologist and we learned that this condition is called Strabismus.  According to the American Association for Pediatric Ophthalmology and Strabismus, 20-60% of individuals with Down syndrome have eyes that are misaligned (Strabismus). 

 

Instagram followers may recognize this photo from our recent opthamologist visit.  Both Josie and her chicken got really cool eye patches during the exam:

 

The solution for Josie's type of Strabismus is glasses, so this morning we set out on a little road trip to be fitted with a stylish pair of specs.

 

As soon as we walked into the optic center, Josie began excitedly pointing out her favorites:

 

There were so many choices and they were all so darling!

 

 It's a good thing a surprise visitor showed up to help us make our final decision!  Mama Hop even brought balloons to help us celebrate Josie's induction into the glasses club! 

Sadly, Aunt Leanne couldn't come because she had to work.  She's responsible like that! 

 

While this isn't exactly like the pair we chose, it's the most similar.  We will have to wait 7-10 days to receive the actual spectacles that are being custom made for Miss JoJo.

 Josie's opthamologist highly recommended a brand called Miraflex because they're virtually indestructible - and that's important at our house!

 Little Bit even got to try on a pair.  Couldn't you just eat her up?!  She looks so studious!

 

After we took care of business, we all went out to lunch.

 Merryn's latest obsession is "Cheers!"  She insists upon doing it before every sip.  Josie plays along for the most part...

Overall, it was a fun and productive day!  We can't wait to see the final result.  If anyone has any tips for encouraging kids to keep their glasses on, we'd love to hear 'em!

 

Special thanks to Mama Hop for joining us on our optical adventure!



A proper send-off

In October we spent all this time focusing on Down Syndrome Awareness Month  and then suddenly November is here and it doesn't feel like we gave Down Syndrome Awareness Month a proper send-off.  No worries - it's not too late.  There is a simple and meaningful way that we can move forward knowing that we made an important contribution to the Down syndrome community.

 

This opportunity is brought to you by Dr. Julia Kinder.  Dr. Kinder is a family physician and a mother to an 8 year-old girl with Down syndrome.  She has created a simple petition that is requesting that all medical students receive proper training regarding Down syndrome.

Why is this important?

90% of pregnant women who find out that their baby may have Down syndrome choose to abort. 

 

While this blog does not exist to take stand on divisive political or religious issues, we are here to advocate and inform about life with Down syndrome.  As a physician and parent of a child with Down syndrome, Dr. Kinder knows that the decision to terminate a pregnancy because of Down syndrome is often based on a diagnosis that is delivered without proper resources, support and information.



You don't have to look too far to find people in the Down syndrome community who have numerous stories about negative, inappropriate, or offensive comments made by medical professionals about Down syndrome.  Dr. Kinder lists some examples on her website. 

 

Thirty five years ago, my parents did not have a pre-natal diagnosis.  However, when Leanne was born, a doctor told my parents to institutionalize her, forget about her, and move on and have other children.

 

These types of comments are delivered out of ignorance.  It's a shame that members of the medical community who are seen as resources for knowledge and information, do not have the education nor the comfort level to deliver a sensitive and accurate picture of Down syndrome and it's implications for a child and family.



Dr. Kinder's petition simply requests that all 3rd year medical students receive a minimum of two hours training with up-to-date information about Down syndrome, how to productively deliver the diagnosis, and how to provide support and resources for the family.

 

She needs fewer than 4,000 more signatures.  Please take 30 seconds to click HERE and sign Dr. Kinder's petition.  YOU can make a difference. 

 

*Fellow bloggers, please feel free to pass this information along to your readers.