Skip to main content

sticker shock

Thursday 11/23/2007

Your first Thanksgiving was spent in the hospital. We felt so calm this time during the admitting process. It was strange. I still hate the thought of being in the hospital. And I hate that we have to give you the shots. I wish there were another way. But right now this is it, honey. Your daddy says it's more the holding $5,000 in one needle than the actually pricking your leg! But he's been so strong for me - for you. He thinks if you were big enough to make up your own mind that you would chose ACTH too - side effects shmide effects. That it's worth the risk at a chance for a normal life. But no matter what path God chooses for you, we love you. Fiercely.

Friday 11/24/2007

Daddy gave you your shot for the first time today. I had to leave - but then I was torn up with guilt. I left because I didn't want to make daddy nervous. And I couldn't bear to hear you cry.
The nurses had to take blood from a vein in your head! Barbaric! But you're so strong & forgiving! You stopped crying the minute I cuddled you! It helps that I know you know we love you.
Toby & Bristel want to see you but the nurses won't let them - they're afraid you'll get sick. But they love you too, Trevor.

Saturday 11/25/2007

You were so happy to finally be home again! I think you feel safest here. Your smile certainly says that!

Comments

Jarret said…
I can't imagine what you are going through, but you know we love you and pray for Trevor a lot...he's a special guy.
Jarret said…
I didn't know you guys had this blog. You are doing a great job Danielle. I feel so connected by having read it. I wish I was there instead though. I love each of you and am praying for my sweet nephew.
Love,
Jenn
Danielle said…
Thanks for the love guys! We wish we could be together too... soon enough i guess

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...