We met with Dr. Matter of Fact (I’ve changed her name from Dr. Kind, not because she isn’t kind – I just really appreciate her direct approach) on Friday regarding Gage’s bad labs and repeat labs and it wasn’t horrible. But I guess it’s all relative. He’s not in acute renal failure, but his body is having some problems that require intervention. Again.

A year ago last June when Gage had a small bump in his labs that wasn’t good, I remember talking to Dr. Matter of Fact and her saying Gage would need EPO injections (which by the way…small needles, with medicine that “burns” upon entering the body) to combat the anemia soon and that once the injections started, it would be a slippery slope. That he’d never go off the injections. Until transplant, that is. Since he was diagnosed, he’s been anemic. And looking back now over his little life, we’d have to say that his anemia affects him daily in an adverse way. He’s really tired, and that plays into behavior. Sadly, we think he hasn’t ever felt really good. That he doesn’t know what it is like to feel healthy. So he doesn’t know how to articulate that he is feeling badly.

So, we’re on the side of the hill, and it’s about to rain. Down. Pour. The Slippery Slope. Dramatic visual? Probably. But it feels dramatic to us. Soon, he’ll start EPO injections, 2x per week, administered by us. Gage hates change. And maybe the only thing he hates more than change is needles. Of any kind, for any reason, at any time.

In about two weeks, once we get pre-approval from BlueCross/BlueShield and/or Medicaid, we’ll schedule a home health nurse to visit us and teach us how to administer shots to the boy. In the meantime, we’ll get used to two other drugs: Vitamin D (active, so it doesn’t have to be filtered through the kidneys, and goes straight to his body) and regular ole’ Tums, for calcium (to keep his body from taking calcium from his bones).

We asked Dr. Matter of Fact to look into her crystal ball for us and try to predict when he will have a transplant. I’m sure she loves this question from parents. And after saying she could be wrong – that it could be sooner, it could be later, she said maybe the age of 10 or 11. I’m not sure how to process that today. My head is still stuck on having to give our boy shots.

When a new symptom or treatment is realized, we’ve found we need time to get over the shock. We need time to mourn that the next stage of this disease is upon us. Time to mourn what should have been, time to fear the future before us. But, the world just keeps moving on and that usually helps us snap out of the fog. We’re gatekeepers to Gage and Quinn’s medical and educational needs, and it takes a lot of our time and theirs, but they still have lives to lead that are full of joy and happiness, and we try to remember we’re gatekeepers of that too.

IEP (Individualized Education Plan) Update….
I’m thrilled to report that a meeting at Gage’s school about his IEP went so well that we felt immediately upon leaving that we moved for the right reasons, at the right time. They were prepared, had read his file, had paid attention to his personality, had implemented the IEP, made arrangements for bathroom breaks and water in his room, and said glowing things about our little boy (“Gage is so sweet”). I don’t care if they say that about every child. It matters that they took time to get to know him so that when we met, I felt they had already paid attention to his special needs. That’s good enough for me today to feel the warm and fuzzies for the place.

And Quinn’s big IEP evaluation is over, now we wait. We’ll go in on September 17th to hear what services the county will offer. In the meantime, she’ll be starting at The Preschool after Labor Day. She hugged and kissed her teachers when we left the open house…hope it goes that smoothly the first day! And, by the way, she’s potty training AND sleeping in a toddler bed! Big girl! She’ll be three this month!