Friday, May 30, 2014

As he should be...

Wow!  Time really does fly when you are enjoying your precious baby at home and not having to travel to and from the hospital twice/day. I can't believe it has already been 2 months now since we have been home and Cohen has finally settled into his surroundings.  He no longer startles when his sister comes running in the room, enjoys gazing at our two fur balls (Karen and Vinny), attends weekly music class at the Old Town School of Folk Music, and is experiencing life as he should be!

As he should be!  That is something I say again and again to gawkers, questions, raised eyebrows and even his nutritionist when she asked why I had signed him up for a music class..wasn't I worried about germs? Of course I'm worried about germs, but Cohen and us should not live in fear hulled up in our home like hermits for the rest of our lives.  After his immunology appointment, we received some very good news that because Cohen was born with a thymus gland, his immune system is very strong.  He also has great calcium and thyroid levels, as well as his production of t cells and his t cell memory function which are highly related to how his immune system functions.  Because of this great news, I wasn't as hesitant to keep him on lockdown in our home. Of course even a small cold will most likely send Cohen back in the hospital, it is less likely he will catch anything more than any other typical kid his age.  We want Cohen to get those experiences that our daughter Isla was able to experience.  He was enamored by the music therapist in the hospital, cooing to her strumming of the guitar strings.  He should be able to experience these special moments in a baby's life no matter how many cords, monitors, or machines it takes to get him there.  "As he should be,"  I said with my eyes to the open-mouthed parents that watched me lug in his equipment into the room.  Why should my child not be able to experience something so amazing as a 30 minute music class, so you can feel more comfortable with yours? Not every parent had that reaction but I am still surprised by how many people do not look me in the eye when I walk into a room with Cohen.  I'm hoping they are just envious of my "super mom" capabilities.  :)

The past month has been a whirlwind of more doctors' appointments, therapy sessions at the house, smiles and more smiles! This is one happy baby!  For everything he has been through it is so refreshing and rewarding to see Cohen's smile.  It lights up the room and warms your heart.

We have also been taking some time to spend getting to learn more about 22Q and help spread awareness.  It is amazing how common this disorder is, yet it sounds like a foreign language when you tell someone who asks.  Annually there is a day in May where zoos around the world host groups to spread awareness for 22q....22Q at the Zoo.  This year we attended and made shirts to spread awareness.  The shirts actually had people talking, so even if we were able to get one person to google 22q when they got home, it was worth the trip to the zoo that day.

Also, for many people that already know, Ryan is actively working on spreading awareness through his new mission State of Kind.  He is attempting to do an act of kindness in every state and helping promote 22q by working with the Dempster Foundation.  Ryan Dempster, a famous baseball player, has a daughter with 22q, and he created this foundation to help spread awareness for the rare genetic disorder.  He is working with a local brewery here in Chicago, Pipeworks Brewing, to create a beer that will help with this.  Last week, he went over to the brewery to help brew Cohen's State of Kind beer, a wit ale made with blueberries and hibiscus.  Here is a sneak peak of what it will look like.
There will be a fundraising event to promote the beer and a percentage of proceeds will go to the Dempster Foundation.  I am so proud of my husband for creating this mission, blog, and now beer to help everyone see how amazing our little guy truly is!  You can learn more about his project at 366randomacts.org.

So lately these days have been spent getting big and strong.  Cohen is now up to 12 pounds 13 ounces and counting! He has doubled his birth weight finally and has also gained over 2 pounds since being out of the hospital.  This is huge for him and almost not expected with everything he has going on and the amount of therapy he does/week; however, Cohen isn't your average baby.  Here he is actually enjoying his tummy time for once, as he should be!
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1 comment:

  1. It's Kayla's friend Katie again. Our little man was just finally diagnosed with 22q. Thought it would be nice to have some internet mommy 22q friends - hoping we could share stories someday! I love reading his updates to see Cohen happy at home with you, where he belongs!

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