Monday, June 8, 2015

Inchstones....our milestones!

The weather is warming up, we are starting to get healthier and free of colds, and our little man is hitting inch-stone after inch-stone.

Inch-stones to us are what milestones are to healthy children.  Small little inches forward and often a few inches backward, Cohen takes to get to the larger milestones that are "age appropriate."   Cohen beats to his own drum and crosses events/successes off his list at his own pace, as typical 22q children do.  This past month, he has had some amazing accomplishments including finally being able to apply the sign language we have been working so hard on over the last few months.  He is so proud now every time he makes a sign and is happy to be able to communicate with us. 
 Cohen currently can sign these words:

He can also understand these signs:
-all done

Here is Cohen signing head/hat while watching a baby signing time video.

And he has officially said his first word: MILK....Mommy is a close second but still not consistent quite yet!

He is able to follow simple commands like: give mommy the ball, or put the book on top!  He has mastered holding books in the proper orientation and is taking interest now in puzzles.  All of these behaviors typical for a child much younger, though it doesn't matter to Cohen or to us because that's all he knows and he smiles through it all!

Just today for the first time, Cohen took his first crawling scoots across our floor trying to reach a favorite toy, Elmo!  For once we are crying tears of joy and not tears of worry or anguish!  He still hasn't quite figured out his motor plan but will and once that happens, we are all in for trouble....especially his older sister Isla.  For the past 18 months she has been a sibling to a "baby" who has kept to himself.  Now that he is mobile, I'm anticipating the sibling rivalry to finally commence!

While waiting and anticipating all of these inch-stones, we have also become very involved in the 22Q community.  In May I was the 22q at the Zoo coordinator for our local zoo.  This is an international event that helps spread awareness for 22Q and also allows families to get together and share their experiences.  We had about 10 other families at our local zoo.  It was amazing to see that Cohen still remains one of the youngest at these outings and is is very rare to be diagnosed in utero.  

Just last week I was asked by the Dempster Family Foundation to be interviewed to take part in their PSA that they are filming as a means to show the faces of 22q and the story behind the families that are effected.  It was amazing to take part in this interview, share Cohen's journey, and my insight on how lucky I feel we were to get diagnosed so early on.  It is NOT a RARE DISORDER, but a RARELY DIAGNOSED ONE!  

Just last weekend, we attended the 22Q Mystery Bus Tour. 

 This is another event the Dempster Family Foundation has created in trying raise awareness, while on the GO!  They travel all over the country with this bus so that the everyday traffic/citizens can see the bright colors and hopefully research more about what 22Q is.  It also gives us families another opportunity to network.  It seems like we often meet up at different events, but to me it seems there is never enough time to learn more about another family's experiences or their child's struggles.  I could talk to these parents forever, comparing notes on doctors and asking them questions about their experiences if their child is older.  I want to pick their brain.  I often find myself scoping out the older children, not in a judging way, but looking to understand what I have in our future and what I could expect with Cohen when he's 7, 10, or 19 years old.  It's always a double-edge sword when we attend these events.  Though it is helpful to network with other 22q families and be able to see the huge successes of children older than Cohen, it's sometimes also overwhelming to see what hurtles we may face as he grows.  

As a way to continue my mission in spreading awareness for my son and the rest of the 22q community, I am doing so through my new business.  Back in August of 2014 after being home with Cohen for 5 months, I started my own business as a merchandiser for a jewelry company called Chloe & Isabel.  It was the perfect opportunity for me for a variety of reasons. I'm able to stay home with the kids and care for Cohen while having an online store as well as host in-home pop ups during the weekends and evenings.  It has allowed me to feel human again, meet some amazing women, and engage with new people to share Cohen's story with.  My goal is that each time someone purchases from my online boutique I'm able to share with them about 22q and hopefully when they are complimented on their new purchase, they can pay spread awareness as well.  
You can visit my online boutique here:

Ryan continues to work partnering with the Dempster Family Foundation to help spread awareness for his project: State of Kind.  He currently has a few different states in the works, so stay tuned!  You can stay up-to-date on his mission here:  Also with the current NHL Finals, he has organized a fundraising event that will allow friends/family to donate based on the Blackhawks success!  Learn how you can participate here: