Lookin’ cool!

My Sissy shared her hat and sunglasses with me, and they look pretty cool on me; if I do say so myself! Haha!

It’s been ages since Mama updated my blog! More to come soon…

An angel has left us…

In honor of Ashley Wiliams:

I know that we will one day meet her in heaven, and that she is there now with a new heavenly body that can do whatever she wants it to do, she is now free from the restriction of her 15th chromosome deletion. Ashley may now run, jump, do cartwheels, sing songs, talk to loved ones who have gone before her, who have now met her at the gates of heaven, and I am sure that she still has her life-affirming, infectious giggle that all of our angels have!

Ashley’s firstgiving page, Our Alabama Angel with her picture, please think of donating to her page in honor of her and her family.

Here is a quote about Ashley, taken from her firstgiving page, it was written by her mom, Alicia:

If you are viewing this page you have somehow been introduced to our world of Ashley and Angelman Syndrome. If you have ever met our Ashley she has surely captured your heart or hair in some way (((smile))).

Here is a quote from a beautiful letter Erin, Maggie’s mom, wrote to Ashley:

You left a legacy of smiles and love; there is no finer legacy to leave.

We will smile as we think of you and your sweet, joyful smile. We will miss you terribly and our hearts will ache with pain for your family who had to give you up so soon. But we will think of you running free, leaving only a wild giggle in your wake.

A song by Celine Dion, called Fly was posted by Darren Humphries after losing his angel, Elijah, and it’s so beautiful and I thought it should be shared again, to honor Ashley, Elijah and all the other angels we have lost to this world:

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven’s love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem’ry bittersweet
Until we meet

Fly, fly do not fear
Don’t waste a breath,
don’t shed a tear
Your heart is pure, your soul is free
Be on your way, don’t wait for me
Above the universe you’ll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won’t forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light

Emma’s mom made a beatiful video with a song for Ashley, visit and watch: Angels in the corner; in honor of Ashley.

Please keep Ashley’s family in your prayers!

My new faux-hawk…

Mama says I am “Oh, so handsome!”, and my cousins and Sissy think I look waay cool. I can’t believe Mama let them cut my hair so short, she is always talking about my “sweet baby curls”. Kinda embarrassing isn’t it? I am trying to talk her into getting the blue hair gel for my faux-hawk, that would be awesome!

Remember…drool is COOL! (but snot it not)

Hot tub heaven…

Now this is the life! Ahh…

Making thank you cards…

Today Mama let me make thank you cards for all of our friends and family who have donated to my Angelman Walk-a-Thon. So if you donated to us, you are going to be given one of these one of a kind masterpieces by me! Thank you all who have, it means SO much to us! If you haven’t and you’d like to, click in the right sidebar on “Firstgiving: Sponsor Me” and you can join in the movement to help all angels everywhere! Hooray!

I LOVED the cold squishy paint on my hands, it was wonderful!! I hope that everyone likes my art, I had a great time creating it!! I learned the picture communication card for paint today too! I am definitely going to be using that one more often! Watch for my future masterpieces.

Hugs to all!

A sad day for the Angelman Community…

A blog post from Mama:

Yesterday it was announced that Dr. Joseph Wagstaff was found dead in state park, apparently from a fall. Here is the article: “Charlotte doctor dies in fall” .

Charlotte doctor dies in fall
By JOE DEPRIEST, The Charlotte Observer

CHARLOTTE - Two climbers found the body of a Charlotte man at the base of a 70-foot cliff in Crowders Mountain State Park Tuesday morning, authorities said.

Joseph Wagstaff, 52, apparently fell to his death, according to Gastonia police.

Gastonia police Sgt. Dean Conner said there was no evidence of foul play, and that Wagstaff was wearing street clothes and had no climbing gear.

Park Superintendent Larry Hyde said Wagstaff was found about 11 a.m. on the eastern face of the mountain at the Linwood Road park entrance. Hyde said he apparently died sometime after the park opened at 8 a.m. because his car, which was found in the Linwood access lot, wasn’t there last night when Hyde closed the park. Hyde said he hadn’t talked to anyone who had seen Wagstaff on the trail.

Wagstaff was a licensed pediatrician. Family members could not be reached Tuesday night, but Dr. Frank Grass, a co-worker, said Wagstaff was an internationally known genetics expert who focused on Angelman syndrome, a genetic developmental disorder.

“He was one of the top researchers in the field,” Grass said. “He was great to work with. He was very knowledgeable. … The families that he worked for were devoted to him, and he was devoted to them.”

Hyde said this is the first fatality in the past two years he’s been at the park. Six people died on the cliffs between 1986 and 1997.

We never had the opportunity to meet Dr. Wagstaff, but many, many of our friends in the Angelman Community did and they all speak of what a caring and compassionate man he was and how he had a passion for his research and patients with Angelman Syndrome.

It is now even more important to raise the funds needed for research now that we have lost this man who gave so tirelessly to our cause.

Please keep Dr.Wagstaff’s immediate family and his Angelman family,in your thoughts and prayers.

I’m learning to “talk”!!

My Mama made this book of pictures for me to use to tell her things that I want or need. She used Mayer-Johnson’s Boardmaker pictures. So far I have learned to use 12 picture cards. Here are some pictures of my book.

This is a picture of all 12 cards I know.

This is what the front of my book looks like when I choose what it is I am wanting/needing…

If I choose eat (it actually says lunch but we call it eat) then I will pull it off and Mama helps me to put it on the sentence strip on the bottom. When I am all finished eating, I pull of the all finished card and we’ll put it next to the eat card and say aloud eat, all finished. I think this is the funny part!

I have learned all of these cards in a week.

(Note from Mama: I don’t know how or why this is all of the sudden clicking so well with Joshua, but it’s been great watching how quickly he’s picking it up now. I think it’s just a readiness. We never tried this exact system before, but something similar with pictures of his real objects. He is just “getting it” now. I chose the Mayer-Johnson pictures becuase I am really hoping to get Joshua a Dynavox V and that is the main system that it uses, so I wanted to see how he did with the pictures and start to familiarize him with them. I am so excited that he seems to connect the picture with the object or activity so quickly. Now I am trying to get him to be able to do this with Dad and Sissy and not just Mama, he seems to think this is just an activity that we do together right now.)

Well, I’ll keep everyone updatd on my picture cards. I hope Mama gives me a card for eat wipes soon! (Note from Mama: Haha! THAT will NEVER HAPPEN!) It was so fun when I swallowed the diaper wipey and the firetruck and ambulance came to visit me! (No harm was done!) Mama called it the “wipey incident”, I just know how cool those sirens and lights were!

Big bear hugs!

Giddyup!

I loved my first day of hippotherapy! I rode Lilly, she is pretty big! I about rode the hair off that horse, yee haw!

Mama took some video also…

See y’all later!

Pooh Bear Picasso

Learning to say “more”…

Mama is making me work VERY hard for a cookie tonight! Watch closely and I will put my lips together and make a “M” sound. It’s takes a lot of concentration!

Note from Mama:

Joshua is doing so good making his “M” sound lately. This was a short video and he was tired. I will try to get another at speech therapy soon, he really gets on a roll there! It doesn’t make as much sense to him for mama to be making him work so hard since he KNOWS that I know exactly what he wants. He humors me sometimes though. He is awesome!!

Remember! Drool is cool and snot is not!~