Wyatt's Adventures with Chromosome Deletion 3p14.1p13
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Remember to Celebrate Results and Hard Work

2/27/2014

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Well hello there!  I wanted to check in and share a little about how therapy has been going.  Our new focus is getting dressed!  Our brilliant OT did this activity with mardi gras beads. She started showing me how to put them over my head and then showed me how to inch it down my body and then step out of them.   This is what Mom had to say:

"Super fun with all the noises and colors at the same time as being very challenging not only mentally but physically. You could see Wyatt really thinking and trying to problem solve. To add to the challenge is his dang muscles. We realized he is still tight in his shoulders/arms and lifting the beads over his head was hard he would bend over half way to over compensate. The tightness in his legs are still a big issue as well. I wish I had gotten pictures very fun and informative! Thought it would be a great activity for others learning to go through those motions as well:)"

So, you know me, I learn something at therapy and of course I want to try it at home.  Not only am I learning to dress, but also to UNDRESS!  Woo Hoo!  Taking off my clothes at random times is a great way to keep my folks on their toes and is such a LIBERATING experience!!

I also wanted to share this little video which demonstrates what I have really been working on.  I am walking!  I am climbing stairs.  I am using open hands.  I am thinking about different ways to have fun and being clever!  It all looks so simple, but for me, these are big WOW moments!
Make sure to check out out THERAPY tab for more ideas!
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Thinking Ahead Can Be Scary

2/11/2014

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Picture
Well hello there, friends!  How is everyone doing?   We have been busy as usual and I am especially settling into a routine of pushing my boundaries, finding my voice and asserting my likes and dislikes STRONGLY.  Ha ha ha ha..the terrible twos have nothing on the terrific threes!  Mostly I am extremely happy, adventurous and loving, but I think exploring my testy side is putting Mom through her paces some days. 

Speaking of Mom, she recently wrote a poem that I wanted to share with you.  Since I'm a kid, I usually just worry about my next snack, what I want to get into next, and who is available to hug me, but I know Mom and Dad often think about what is next for me.  Will I ever be potty trained?  Will I go to kindergarten in a regular school or will I do better in special ed?  Will kids tease me?  Will I get my feelings hurt?  How will I do in the "real world"?  The future is so totally uncertain with chromosome deletions.  I try and tell Mom it will be ok, that we need to live in the moment, but I see that she gets scared
.  Here is her poem:

I am a mother, I am strong
Knowing our journey is not the same
It's going to take longer to get to our destinations
Truly blessed for milestones reached along the way
I am a mother, I am strong
Though sometimes I feel alone and weak
Not wanting to bug anyone with my problems
I cry it out, stand up, and dust off my knees
I am a mother, I am strong
Though I may not look that way
No sleep, no shower, no makeup
Maybe another day?
I am a mother I am strong
And I will put up a fight
Lord help the doctor who questions my knowledge of my child
It's like a sixth sense..don't even try
I am a mother, I am strong
learned to fight back the sobs
while holding them down during procedures, being put under
screams during therapy..I know it's for the best and everyone is doing their job
I am a mother, I am strong
Even on my darkest days
one hug from little arms, one 'I love you'
Reminds me no matter what it will be okay

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    My name is Wyatt Hawkins and my Mom and Gramma are helping me share my adventures.   Typing isn't my thing....YET!

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