On the same day we were getting ready for Quinn’s 3rd birthday party, I was meeting on Quinn’s new educational “label” and getting calls from Gage’s principal.

I met with the board of diagnostics regarding their recommendations for Quinn. For the sake of the school system, she is a “Significant Developmental Delay” child. They believe that Quinn will benefit from a preschool focused on her developmental needs, which are speech (articulation), fine motor and gross motor skills. This preschool is set up to deal with her needs. From what I understand, it will be an “inclusive” classroom; having children with special needs and also kids that are developmentally “normal” mixed together and she will start on October 11th. Quinn’s physical therapist had hoped Quinn would be accepted into this program, so we had been warned it could be a possibility. It wasn’t a shock. And although I’m thrilled for Quinn that she will go to this school, because I believe it is best for her, I’m sad there is a need for it.

On that same morning of Quinn’s IEP meeting, we learned that Gage is having a hard time at school. He has been showing frustration by hitting other kids and it getting in trouble with his teacher and now the principal. They assured us that we will work as a team to figure out the best way to handle it. He will be seeing the school counselor, and I’ll be contacting a child therapist to see if I can set an appointment for Gage to see how we can help him. All we can surmise is that Gage is having a hard time adjusting to several things and he is lashing out. The classroom size, the work required, the noise, the lack of one on one attention, the new drug regime including shots and more lab work. As parents, we are sad that he is having such a hard time. And although our heads tell us the school has to deal with similar things with other children, we’re really sad that it is our Gage that is disrupting things in the classroom. And perhaps there is a twinge of us feeling inadequate as parents mixed in there as well.

Right now, we’re a little emotionally fragile. With so many adjustments for all of us. New meds, school issues, diseases progressing, houses to sell and emotional pains on us. But as we know, life just keeps moving on as Quinn’s party proved.

Quinn’s party was the small celebration we wanted. We’re so thankful she is with us. She’s enriched our lives in ways we can’t articulate. She was the reason we knew about Gage’s kidneys and were able to treat him earlier. She adds a certain amount of little girl energy that our family needed. What a surprise she was. We’re thankful her health is stable right now and we’re delighted she’ll get the help she needs at her new school. We’re the family we are supposed to be with her in it. No matter what the future holds with all of the kids’ challenges, today, we’re grateful she is with us celebrating number 3, reminding us that there are more important things than educational labels, meds to track, doctors to see and transplants to think about. I mean, really, right now, we have to master playing with the new girl toys she got for her birthday.

This month Quinn will be three. We love the birthday milestones. Every birthday is a reason to celebrate all the things we’re grateful for: our families and friends, stable health for the time being, decent kidney function, compassionate doctors and nurses, and a life full of boundless energy and youth. Birthdays are the promise of hope that all will be okay.

But as you know. Things are not okay. We’re faced with medical and educational challenges at every turn it seems. And sometimes, when we think about our situation long enough, we’re terrified to the core. Times like this we call upon our faith to carry us through. Faith that we’ll see many more birthdays for Quinn. And graduations, marriage/kids, career success, and a life full of compassion for others. Perhaps faith and hope are intertwined in our house.

I don’t believe God wants my children, or any children for that matter, to suffer painful lives and die as a result of a devastating disease. I can’t believe that God would want that for us, or for Gage and Quinn, and frankly, if I did think that I would be angry at God. I know for some people when faced with a crisis deal with it believing God chose them for it. I believe God knew what would happen, and put people in our lives to surround us with love in such a way that I would learn about the undying love of God. I believe that you people in our lives have enough faith and hope when we don’t.

And all the while we celebrate the lives of Gage and Quinn, and her upcoming birthday; we’re reminded of the fragile nature of the kids’ condition. We’ve started more meds for Gage including EPO (Procrit) injections for Gage and it is not fun. He’s coping as best that can be expected. A little old for distraction from THE MOMMY WITH THE NEEDLE and a little young to understand why they are necessary.

Did I mention how much Gage hates needles? And let me tell you, that THE MOMMY WITH THE NEEDLE doesn’t make the needle any more pleasant for the boy. We’ll be bringing him in for labs at the end of the week to see if his body is responding. Dr. Wonderful thinks it will work. Gage and Quinn’s anemia isn’t caused by acute renal failure like normal progression for ARPKD kids (they aren’t in acute failure yet) she believes the anemia is really connected to the other kidney disease (which isn’t really seen in kids this young).

So we’ll wait for the lab results. And we’ll hope. And in the meantime, we’ll celebrate Quinn’s milestone. I tend to think we appreciate and savor the milestones differently than families with healthy children. Or at least I hope we do.

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!