MISSING IN ACTION: MAX'S HEARING AID

Max's hearing aid has gone missing in action...and I imagine he is quite the happy guy. I wouldn't be surprised if he himself didn't give it to the dogs. (The only reason I am not blaming it on him is because he hasn't reached that "giving" skill yet!)

So I am pretty bummed...we have really been trying to wear it more often. But he always is pulling it out...as evidenced in the photos below. As soon as I put it in, he reaches to take it out. It's quite a challenge!

For now, Maxwell has won. But don't worry Max, I am making calls today and hopefully we can get a replacement quickly. (And very importantly, we are HOPING that insurance will cover this one.)


What is this thing in my ear? I keep taking it out, Mom keeps putting it back in.

Maybe if I tilt my head backwards, it will just fall out?











Here I'll just take it out with a simple tug...













No that's alright Mommy, you keep it.

FAMILY IS HERE...AND ANOTHER MILESTONE IS REACHED! YAY!!!

We have family in town and we are having so much fun! My mommy's cousin, Kristen, lives in Alaska and her parents, Aunt Pat and Uncle Jim, live in Ohio. (And guess what? Grammy is coming this week!!! I am loving showing off to everyone...and so is Mommy!)

Not only are we loving spending time with them, but there is an added bonus: Kristen is a physical therapist who works with children with special needs! YAY FOR ME! And she helped me reach yet another milestone! (I know, I know...Mom says it's hard to keep track of me these days. I'm checking milestones off our list so quickly!)


Look at me on my knees! Woo hoo!!! :) This is huge! (I still need some help, but what progress! WOW!)


















Hey Mommy, check me out!













Thanks Cousin Kristen for working with me! You're fabulous!
















I think Uncle Jim is pretty impressed with me! :)













And of course I had to show my new walker to everyone! (Check out Mommy's silly face...we were doing my favorite sound "ooooohhhh" to each other.) That's Aunt Eliz in the background admiring me! :)

JERRY SPRINGER

I know that is a weird title for this blog, isn't it? What does Jerry Springer have to do with Maxwell and CHARGE Syndrome?

Well, Springer was recently on Access Hollywood with his daughter. And some fellow CHARGE families think she may be a CHARGEr! Some of her issues (born with choanal atresia, deaf in one ear and legally blind) are very similar to those of CHARGE.

If you want to watch this extremely inspiring video, visit: http://www.accesshollywood.com/accessvideo/. Then click on "Jerry and Katie's dance" in the sidebar.

The thought of Maxwell getting married one day and having a job is sooooooooooo absolutely thrilling. I know this is just one person and there is a HUGE, HUGE, HUGE spectrum within the disorder. And I also know that we don't even know if she has CHARGE! (We are getting way ahead of ourselves!) But regardless of all of that, this is a VERY encouraging story! Enjoy! :)

CAUSE OF CHARGE

For parents of a CHARGE child, there is a 1 - 2% chance of giving birth to another child with CHARGE. While it is supposedly a random gene mutation, there are families that have more than one child with CHARGE and therefore there is this slight chance of reoccurence.

Of course this is of concern if I should marry again (Yes, I know there will be quite the interview process by friends and family!!!) and want to have more children (I would love to give Maxwell a sister or brother!). Can you tell I am excited about one day having a real marriage and family for Maxwell...that would be so incredible! :) I want to surround my precious little boy with lots and lots of love.

The slight chance of reoccurence would not have stopped me from wanting more children, but there would have been a lot of worrying.

Anyway, I knew that statistically the chances would lessen since Max's father and I are no longer together...but I learned even better news yesterday.

Supposedly the gene mutation can only happen in the sperm. Therefore, *hopefully* this would not be an issue should I have more children in the future. I was pretty happy to learn this news.

But we (the CHARGE community) are still quite anxious to truly understand the cause of this mutation. Is there any impact from chemicals or the environment? Can we prevent our kiddos from having such difficulties? There are a lot of studies on the topic, but for now we do not know the answer. So all we can do is cherish our kiddos and help them reach their fullest potential. They truly are some of the most inspiring, cutest, amazing children I have ever met!

* I have a big smile on my face right now thinking that some day I could give Maxwell a sister or brother...how fun would that be??? He would be such a cute older brother...his first trick would be to teach them how to pose for the camera!

Ok, I know I have my hands full right now with Mighty Max, and marriage is not an option for a very long time, but still...a girl can dream, right??? But what worries me is how in the world could I love another child as much as I love Maxwell? My heart would burst! :)

*UPDATE*
Since I posted this, I have corresponded with several more experts in this wonderful, ever confusing world of genetics. Basically yes, the mutation is most likely (but not definitely) caused by a copy error in the father's sperm. However, there simply are no clear cut answers. It is amazing how many unknowns there are in this field of study! So overall the news is encouraging, but who knows???

EXCITING GLIMPSE INTO THE FUTURE

Thanks to Cassidy's family, we had an exciting glimpse into the future this weekend! Sweet Cassidy is a four year old CHARGEr, and she no longer needs her walker. YAY CASSIDY! So they gave it to Maxwell. When they offered it, I got very teary eyed. I was soooo excited to even think of Max walking some day! Isn't it funny for a mommy to be this excited about her child using a walker??? :) I know, I know...but I am just thrilled with the thought of him being mobile! I know it will be quite a journey (I'm sure very frustrating at times), but I feel very confident he will get there one day...and we will be walking, walking, walking!

With all of his balance/vestibular/low muscle tone issues, he will certainly get great use of this walker. And look how absolutely adorable he is standing with it! He really, really loves it! He gets this very proud and happy look...incredible! Now obviously he isn't quite ready to use it right now, but he certainly likes to stand there for a moment. Then he gets pretty wobbly and starts to fall.

Seriously, have you ever seen something cuter than this???



















This is so cool! Thanks Cassidy!












Mom, can we try this again tomorrow?