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?

SO CLOSE TO YET ANOTHER MILESTONE!!!

I absolutely love my time with the Beyerlin gang! And tonight I decided to reward them with a brand new milestone. I nearly sat up by himself...from laying down. This is HUGE! It requires a lot of coordination and strength to move from one position to another and we have been really working on this. The last few days I have made great progress, and tonight I decided to surprise everyone and show it off! YAY! I was soooo close! I bet within the week I will be doing this for real. Can you believe my progress??? WOW!

Thank you Mama Beyerlin and my girls for all of your love and support! You are amazing to me and mommy!!!

Look at me, look at me!














This is my famous "crawl." I am up to about six forward scoots...SO COOL! Now if someone could just help lift my head for me, I'd be good to go!




Look at how great I am sitting up and playing at the same time! WOW! WOW! WOW!







Just chillin' with my girl...












And of course my other girlfriends want to join in on the fun too! Seems these days no one can get enough of me (including my doctors!) :)

TWO NEW SPECIALTIES!

This week we are adding two new therapists to Maxwell's growing team! Today we have a therapist coming from the Opportunity Council to teach "infant massage" to us. This is supposed to be very helpful for children with low muscle tone. We are doing it right before his Occupational Therapy appointment so that he is at his prime! I am very curious to see how he responds.

Then on Friday we begin with our Feeding Therapist. We have been trying to get into this clinic for months now, so we are very excited! This is an area that has a lot of potential and I have really been working with Maxwell on accepting various tastes and textures. Hopefully the therapist has some special tricks that will take Maxwell to the next level!

I need to count up Max's team members...it must be nearing 20 people now! Yikes! No wonder my phone is constantly ringing and our appointment book is filled! :) But whatever it takes, we will do....he is making great progress these days and I want that to continue!!! :)

FIVE ABSOLUTELY AMAZING KIDDOS!!!

We have soooo been looking forward to our get together with our CHARGE buddies!!! The big day was Saturday and it was a lot of fun! (And Max's heart behaved itself...yay!)

There were five kiddos with CHARGE and their siblings and parents. We met at Cameron's house near Seattle.

It was wonderful! We have all supported each other so much via email and phone...but it is so much better in person! And we all absolutely loved getting to spend time with each other's children and admire their tremendous progress. Each of them has something very special and unique! And it is also so interesting how common some of their CHARGE "traits" or "quirks" are...the shape of the ear, the famous happy dance, or the floppiness when they sit. In many ways, they are family as they are genetically linked with CHARGE syndrome.

At one point, three kiddos were being fed via their Gtube...and it was completely normal to have the suctioning machine being used throughout the afternoon. And no one even blinks about any of it because this is the norm for all of us! :)


Max's first time wearing shoes! So fun! (Like his toy?)













I brought along Max's favorite toy so that he would feel comfortable. All the other kiddos loved it too! So cute to watch them all together!
















Now Cameron joins in too!


















Max and his friend, Evan.













How cute are they sitting beside each other playing???













Miss Maya and Evan checking each other out...














And this is beautiful Cassidy being silly for me! She's adorable!

















The beginnings of the WA State CHARGE support group! Love you all!

VISIT WITH "AUNTIE" KIRSTIN

"Auntie" Kirstin, my mommy's friend, came to visit this weekend. It was so much fun to meet her! :) She and Mom were roommates in DC during their carefree, wild days (maybe when I'm older Kirstin will fill me in!) and have stayed close friends through the years. I told Mommy we still have wild times now...they are just a different type of "wild!" hee hee!

Mommy was very proud to show me off and share all of my latest accomplishments. And Kirstin even met a few of my CHARGE buddies at our get together this weekend. (We have lots of cute photos from that....soooo much fun!)

Thank you for coming...we look forward to seeing you again soon!!!


Kirstin's so silly! Now if she would just let me grab that hair of hers!!! :)
















She brought me this duck costume...and I'm not too sure how I feel about it! But I do look quite cute! :)















These ladies are funny. And I sure do love 'em!