Skip to main content

ho ho hoooo what a week

  • Christmas Eve - spent in the ER because you had a really high fever. Note to you btw - you're lucky you're so cute cause that was NOT!
  • Christmas Day - your sister was super sick. The hospital called - your strep test came back positive. You & daddy hauled it to the ER. Again.
  • The day after Christmas - we gave you your last injection of ACTH! Hip hip hooray!
  • You finally found your crawl groove. Just when I was starting to let my drama queen persona take over too!
  • You started saying "mama". It's been over a month since I've heard those sweet words spill from those even sweeter lips!
  • You laughed while we were playing catch. It was the first time ever! Divine!
  • I only cried a couple-ah times. Couple-ah dozen that is.
  • You looked really cutsie in your Christmas clothes.
  • Bristel has claimed all your new toys. Along with her own.
  • Your face shows how you feel about Toby. Over the moon!
  • I told you I loved you last night. And that afternoon. And that morning. And the night before that. And the....
  • My New Year's wish is that your seizures will remain in remission. That you'll continue to thrive. That you'll always be happy! And that you'll know w/o a doubt just how much we all love you!

Comments

Anonymous said…
wow what a cutie! look at him go!

deb
Anonymous said…
I know...he's just gotten the hang of it and now theres no stopping him! Yeah...I think! :O)

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.

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...

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...