Skip to main content

Take 2 PICU (a picture marathon)

Here is my best shot at snapping Trevy studying his left hand...





My camera just wasn't quick enough to catch a really great sequence...cause it is really WAY cuter in person!






And this is Baby Birdie Trevy...little lips trying to suck sips of juice from the straw...



Trev has been very quiet. And not really interested in much other than sleeping. Or the occasional sip of juice.

But for a few minutes he enjoyed making the little wheel spin on the toy...

Nurse Kim was obsessive about making sure he was nice n' comfy. Feet propped just so. Neck roll. Clean sheets.

I think Trevy may have a crush on her actually!

Labels:

Comments

Shelby J. said…
I am just amazed...these pictures are wonderful of your little guy! I love the shot with his brother's pic - you get the view as Trevy does of his big brother smiling at him - it must be so comforting for him to have his brother and sister to look at. And him studying his little hand is just precious...it's the little things in moments like this that are HUGE blessings. Keeping you all in my prayers!!!
October 11, 2009 at 7:46 AM
Lisa said…
He is so cute! And doing a lot more than Julia was doing at this stage, I might add. Hope you get out of the PICU today soon.
October 11, 2009 at 7:50 AM
Anonymous said…
These photos are GREAT! Thanks so much! Trevy is looking really good to me. His eyes look less swollen.

LOVE that you are offering him opportunites to do active play with his hand. (Where did you go to OT school?)

And while Nurse Kim keeps him comfy, he has no incentive to move. Just before sheet changing time, can he have a bit of up-pillowed time? (Just like the moments of play with wheel spin toy.)

Beyond grateful to you and J for sharing your experience online.
Barbara
October 11, 2009 at 11:08 AM
blogzilly said…
The stuff you've talked about with the puzzlement over the right hand difficulty has been tough to read about, but you've been remarkably strong throughout, or at least you appear to be!
October 11, 2009 at 11:52 AM
Danielle said…
Shelby...you're such a sweetie! Thanks!

Lisa...it does my heart good to hear that. Because today he's just so...quiet. Just laying there. Not fussing. Not playing. Not eating. Just quiet.

Barbara...you've taught me a trick or two! ;)

Ken...it is really really hard to see him struggle to use his right hand. Even after relooking over the pictures...his right arm is just like dead weight by his side. I hate it. I hate that he can't clap. Can't hold something with his left...and spin with his right. I'm not as strong as it may look. Because some of this stuff is tearing me up...

...danielle
October 11, 2009 at 12:45 PM
Colby said…
I want to bite those toes!!!!

LOVED looking at these again this AM....

Cyndi
October 13, 2009 at 7:52 AM
Post a Comment

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.
1 comment
Read more

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more