Skip to main content

grids for Henry

As wild as it may seem from the outside...



there are things about our (crazy seizure saturated) journey in which I find great peace. Blessing even.



High on that list would be the heart-connect that forms between other seizure parents. Some of my closest friends on earth are other IS families. That connection is many times why I continue to update this silly ole' blog. Not just for it's therapuetic benefits.



Enter Henry's mommy. Who hails from England.



She followed our radical brain surgery drama as it unfolded for all of cyber space to see. I'm not sure how she found her way here. But I do know what held her. Our courageous little boys share some things in common.



Infantile Spasms.



And today...



radical brain surgery.



For the prayer warriors among us...Henry will have the invasive EEG placed.



(click here to enhance the fervency of your prayers as you're reminded how hard on the heart this will be for them)



He will remain with the grids in place for awhile...



It's a sucky sucky way to spend the holidays. And my heart breaks for you guys...you know that.



But I'm praying it will be one of the sweetest (though it may take several weeks later to feel) Christmas gifts ever!
Labels:

Comments

Alicia said…
Praying for Henry, and his parents.
December 17, 2009 at 3:03 PM
lisa said…
I take it they don't blog? How does anyone get through this process without blogging?!

Many prayers going out to them...this is such an impossibly difficult thing to go through, despite what an answer to our prayers it is. And at Christmas time. But it is so so worth it. Best of luck to dear Henry, and strength to his parents as they go through this process with him.

And I agree...the camraderie among IS parents is such a special thing. I feel so badly for parents pre-internet!
December 17, 2009 at 4:40 PM
Anonymous said…
Thank you and thank you and thank you.

Not really much else I can say - not sure how I found you either!! (think through the IS yahoo group)

Lisa - I have never figured out the blogging thing but wish more of the Brits would do it so I could see how they got on, have found all the blogs I've read so helpful. And my husband has too as we saw pictures of scars, read stories of swelling, etc. which has really helped us prepare.

Henry is doing fine so far, had a temp spike yesterday but it went back down, he's managed to get some sleep, his right eye has swollen shut :( but otherwise we're all doing ok.

And we did our Christmas early, so we really don't mind being in now, though we are of course praying and wishing for the best present ever....
Meanwhile, we're waiting for snow!

Thanks again kt xx
December 18, 2009 at 12:01 AM
Adesta said…
Keeping Henry and his family in my thoughts and prayers. It's a great time for a Christmas miracle! :) {hugs to all the IS Parents}
December 18, 2009 at 4:14 AM
Post a Comment

Popular posts from this blog

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

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...
27 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