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!