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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

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