Percisely.

Gage’s last two blood draws have shown a decline in kidney function. Has me a little freaked out.

We take his labs monthly (or a bit more with new med changes) to see if there are trends one way or another. Especially since a drug he is on could hurt kidney function. For this round? I personally will not consider it a trend until Dr. Wonderful says it is. Last month she said his increased creatinine number (not a good thing) "bears watching."

And because of my OCDness I will be charting his labs for the last year on an Excel spreadsheet. Then I’ll be able to tell if it’s a trend or not. Right after I run it by my miss smartypants senior high school math teacher cousin.

We constantly think about our finances in the future. We’re always worried about transplant and med costs, our insurance, and our ability to pay our insurance costs. The insurance cost you ask? More than our monthly grocery bill for a family of four and our utilities combined.

Luckily, when Gage started therapy a social worker encouraged us to file for Medicaid (thanks to all of you fine people who pay your taxes) to cover the costs associated with his therapy. Over his three and half years in private therapy, we estimated that the cost equaled about the average cost for a kidney transplant without complications - $85,000. Our insurance only covered rehabilitation therapy for 60 consecutive days – meaning if Gage was in some kind of skateboarding accident that required therapy to assist him back to health, then our insurance would have been perfect. We were approved under a special waiver and we were thrilled.

Gage needed the therapy, it was not optional. Medicaid saved our family from certain financial crisis having it as our back up. Luckily when Quinn was born we already knew the ins and outs of filing for the waiver. We were approved again.

So twice a year for each child, we keep the paper industry going by filing our review forms. I dread the day the paperwork is in our mail box and I’m thrilled the day I drop it off at our caseworker’s office. I usually have one week to complete multiple forms for both kids, gather and copy all lab reports, doctor evaluations, educational IEPs  and get a doctor to sign the forms a million times and deliver to our caseworker. Today was crunch day. 5 hours later and it’s done. Tuesday all will be signed by the doctors. And Wednesday? In the hands of our lovely caseworker. Not every family can say they have one of those.

This is Bryce. He’s so cute. He has a really special laugh - a fast giggle with a high pitch. He has the prettiest blue eyes you have ever seen. Bryce LOVES. TO. TALK. He talks to everyone he meets. If you meet Bryce you  will be involved in a very long conversation about whatever happens to come up. It will involve many questions on his part and you think “how old is he?” before the conversation is over. When he grows up he will either be a reporter, talk show host or negotiator for the United Nations. You immediately are at ease talking with Bryce.

Bryce has ARPKD. Bryce’s mom is a nurse. Go figure.

I had the pleasure of seeing Bryce and his mom again at the PKD Conference this year. And it was pure happiness to see the little boy who immediately made friends with all of the kids in the room, including mine. If you miss the size of his belly with his protruding kidneys, you’d think he was the picture of health. But his kidneys, like my kids’ kidneys, are attacking many things in his body. It would surprise you the amount of important levels in the body that improperly working kidneys can effect.

It’s so hard to have healthy-looking kids around and know what is happening in their bodies. When I first saw the pictures of all the kids together at the conference I thought “so much cuteness!” and “you’d hardly notice they were sick!” How sad is that?

As a parent, it’s hard to figure out when to tell someone new in our life about our kids’ problems. I want people to know because I want them to understand there are potty accidents, heightened frustration due to feeling sick and tired, that we have to follow a strict, early bedtime because their bodies require the rest, that we can’t have play dates because they have been replaced with doctor and therapy appointments and sleepovers are iffy – because pull ups have to be worn, and changed in the middle of the night, and we’re just not sure when that will be a social and confidence problem for them. And also that we are on constant high alert for each concern we notice, educational or health, and we’re in a constant state of second questioning our choices for them.

I like being around other ARPKD families for the normalcy. Not the like fraud I feel I am with people with healthy, developmentally on track kids. Mostly, I feel like we’re impostors in the healthy world of families with kids who reach their milestones on target, and have normal schedules of doctor appointments (Yearly! If you can imagine!). And they never have to consider the possibilities the long term effects of the health care and educational decisions they make for their children will have on them. I want to shake them, these friends that take their children’s health and milestones for granted. And to understand that they should appreciate the easiness. Because it could be so much worse. Really

Maybe I’m a little jealous? That’s for another post completely.

So thanks Bryce’s mom, Rachel, the nurse, for making me feel like we have a normal family. Thanks for letting me have my guard down for a little bit and letting me be myself. No impostor with you. Thanks for letting the talk about meds and kidney function roll of the tongue like a fluent second language. Thanks for knowing the language of rare disease affected families. Thanks for reminding me that in our little world of rare diseases, we are normal. I love you.