Skip to main content

A is for...

...A-nother doctor.

Yes, that's right. We have added yet another specialist to your portfolio, Trev. Let's see we already have -
  • Dr. Pedi - your everything doctor.
  • Dr. Uro - logist, that is. He fixed your kidneys last October. We LOVE him...and he has even visited you during some of our Hasbro stays.
  • Dr. Neuro I - he was the first to diagnose your Infantile Spasms.
  • Dr. Neuro II - we call her your girlfriend...cause she makes you smile a lot!
  • Various therapists & such.

and now introducing.....

  • Dr. Endocrine - we (me, you & daddy) sat in his office not really sure why we were there. In fact, we met his, "now, you know why you're here right?" with glassy eyed stares. He broke out a flip chart & lots of big medical jargon...and understanding began to dawn. We knew the risks (which are many & intense) of ACTH before we ever gave you that first (dreaded) injection. But we also knew it was your best shot (no pun intended) at beating the IS odds. We will never ever regret choosing to go ahead with it in spite of the risks. Anyway...in our new-to-this-IS-world-way we thought that if you weren't getting injections anymore than the side effects were moot. Dr. Endo used his handy dandy chart & jargon to fill us in. See...ACTH can deplete your immune system & wreak havoc on your body's ability to handle sickness induced stress long after your last injection. And several blood tests later confirmed that you are still in the woods (or wood works as I keep accidentally saying...to which daddy laughs every time). Dr. Endo tells us that you are at risk of renal failure for the next 6 months - every time you spike a fever we're going to need to have labs done to see how your body is fighting off the stress.

This whole journey has been scary from the beginning - and this is yet another "thing" for us to worry about. But honestly, Trevy, I look at your smiles...I watch you progressing...I snuggle you close...and just breath. With relief - because it could be worse. So much worse. With happiness - because way back in Tanzania we weren't even sure you'd make it here. But you beautifully are. With trust - because God has always always been faithful to us. And we trust Him even now.

The link below has more information about ACTH - one of the frontline drugs used to treat Infantile Spasms

Comments

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