Thursday, May 12, 2011

It’s still Surreal (and Ethan's progress)

Like a dramatic calendar scene from a movie, where the days of the calendars furiously fly off the pad, day by day… our life has mimicked that scene. Into the unknown the days are just being tossed as a new day replaces it at a rapid speed. If it would only slow down.

We have nights where we have Ethan come play in our bed right before bedtime. Really, we are trying to get him to go to sleep in our bed because we can’t get enough of his sweet tiny self. We try to bribe him with oodles of hugs and tickles. He won’t have it. He’ll take his crib over our bed any day (ok most days). 

Last night was no different; he resisted our cuddles and just sat up in our bed to watch tv. With much thought and concern he peacefully watched tv. Sandwiched between his mommy and daddy, the light of the tv lit up his little face. His profile facing me…I just got lost in his face. 

His tiny little ear that faced me, the roundness of his cheek and jaw… The little suckling thing he does with his tongue. I am sure that starring into heaven would have felt just about the same. THAT’S my son I said to myself. That beautiful little creature is my son.

And he has Down syndrome. 

I cant believe that I have a son with Down syndrome. It is still a dream at times. Not a nightmare, it just doesn’t seem real at times. I am in no way in denial, but in awe. 


Huh… Ist that strange. Of all the people I know, I HAVE A SON WITH DOWN SYNDROME. ME. US. THE SALDANA FAMILY has a son with DOWN SYNDROME.

I don’t know what I did, or daddy did, or how it happened or why it happened. But it happened. 

And I am not complaining. The feeling is hard to explain. It’s like we won the lottery. This WOW moment that you live in and doesn’t fade. 

It’s simply surreal and time flying by hasn’t changed that. As amazing as things have been, that adds to the dreamy feeling of it all. And if this is a dream, please don’t pinch me.

Ethan is almost 21 months already!

I sit here and shake my head. At his 18 months check up earlier this week (yes, you read that right, his 18 month check up at 21 months! oops) Ethan measured to be a real big boy! 

Weight: 29lbs 13oz  ----  DS Chart: 98%tile   ----   Typical chart: 84%tile
Height: 33.5in           ----  DS Chart: 94%tile   ----   Typical chart: 60%tile

He is pretty much running at this point, and he does the little one arm swing when he runs that is too adorable to watch. Still wears his orthotics, although not religiously. 

Not really talking. At one point earlier this year he was attempting to say “Stop it”… and that stopped.

He does say “No”. And does sound like there are attempts to say words “Jew” for Juice; “Aah” for Andrea, or at times it comes out better “Eh-Ah” since we do call her Drea.
His speech therapist has reported him to say “pop” when popping bubbles. I’ve never heard him. 

He constantly waives “Hi” to everyone. He will walk up to a person, stick his hand in their face and wave. Loves to kiss total strangers, but only applies to children. 

Signs “eat” when he sees something he wants to eat. Will also sign “eat” when he wants juice, but will say “Jew”, so I know he wants juice and not food.

He knows how to sign “more”, but he does it as his convenience. For a few days, he was putting “more” and “eat” together, but apparently just telling me “eat” should be enough for Mom to know that he wants more. 

He knows “all done”, which he will never do when it comes to food, because guess what, the boy  is never done eating!

He will however sign “all done” when at the doctors and when I attempt to clean his nose or anything that is against his will.

We are working on various other sings, but apparently Ethan only picks up on the ones he sees fit and at his convenience. Yes, the boy has learned how to manipulate the household. 

Doctor isnt really too concerned over speech since he is attempting to communicate via sign language. Overall Doc, is impressed at Ethan’s development. 

He is a rock star. 

1 comment:

  1. I know that feeling you are trying to explain. I am in awe of Russell also...He is beautiful, perfect...And he has Down syndrome...And somedays it doesnt feel real, and not in a bad way...but like you said, its like a dream...A very good dream! Loved this post :)


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