Skip to main content

dreaming of a not so exhausting christmas

12/22/07

Yesterday was incredibly exhausting and by the time Dr. H called I was too tired (and cranky) to even try to post. (but thanks Grams for making me feel guilty! :O) And sorry to all the friends who may have checked in hopes of knowing where we're at in this whole mess...

The VEEG (video electroencephalogram) was uneventful - you slept which was essential to a proper read. And I've gotta say - you make EEG-garb look darn tootin' cute! Daddy & I took turns staring at that stupid machine until we had migraines! I have a feeling that before all is said & done we'll be pros at reading those scribbles!

Dr. H didn't have a chance to call until late last night - and the news wasn't great. It wasn't as yucky as it could have been - but it wasn't great. She said there was no seizure activity during your awake cycle - which is improvement. But during your sleep cycle there were electrical charges coming from your left temporal lobe - and she is scheduling more tests - happy happy joy joy. But...Daddy & I are just SO thankful that we have access to this level of health care. We've seen what's out there in the world - and we have learned to appreciate America!

And the better news is - if we can find the source - we have better hope of controlling your seizures! Which means less developmental delays for you!

Even though we were prepared to hear bad news - it still knocked the wind out of us. Again. It's like our life is under going major reconstruction - and just when we find our footing - the foundations start rocking again.

We still have so many unanswered questions. So many fears. Worries. Tearful moments.

But I've been thinking a lot lately. Too much - I have the massive headaches to prove it. But, Trevy, I am convinced a few things. I am convinced that you are not here by mistake! After all the drama we went through in Tanzania...and coming home...and you still arrived! YOU ARE NOT A MISTAKE! And I believe that your life has an amazing purpose! God brought you here & gave you to us for a reason! You're ours - and we love you! And I know that even if your life here isn't what I had hoped for - dreamed of. I KNOW that one day you'll be restored - perfect - dancing in my arms before the Throne.

I'm trying to shika (Swahili = hold on to) that promise. That joy. That surrender of all the me - and letting you go to the all that HE has for you! I'm trying to choose joy.

And praying for a not so exhausted, Christmas!

Comments

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...