Tuesday, March 11, 2008

Arnold/Kidney Kid Update

March 5, 2004March 5, 2008
Been a wild 4 years since those first few days of his life...but nowhere near as wild as we expected, thankfully.

Had another checkup last week--on the 4th anniversary of his initial diagnosis. Not exactly the greatest anniversary to note, but hey...you make the best of what you do. As the pictures above indicate, things are going much better now than they were then.

Kidney function tested as 41% (really anywhere between 30-45%, but the most recent blood work showed 41). For those keeping score at home, "10% is Transplantville...20% is when we start planning." Or so says our doc...homey little metaphor, isn't it? Worthy of Dan Rather. Oh, for those who've asked--we're still waiting on results from that all day test.

The visit was educational...learned about the hormonal component to toilet training. Don't know why I'm so surprised there is one, there's a hormonal component to everything nowadays*. A fringe problem with the kidney issue is that that hormone doesn't usually kick-in on time with kids like him. Which does explain a thing or two. Now I don't just bring this up so I have something written with which I can embarrass him...it's just that there's all these things that come along with his condition. You think about chronic renal failure and you think about transplants, dialysis, growth problems and all that. You don't think about problems with toilet training, or having to go through physical therapy, or potential delays in intellectual development (very thankfully, nothing we've really noticed). Every now and then, can't help but wonder about what unexpected problem is next.

On the less nephrological side, things are going very well. He's the life of the party--even when we're not having one, maybe particularly when we're not having one. His speech development could use some work--he gives soft-spoken a whole new meaning. He has this toy computer that he plays with all the time--he's teaching himself a lot of spelling, letter and word recognition, etc. He's chomping at the bit to grow up--even while we all try to keep him from doing so. His parents, my folks, his siblings, my sister, my niece--we're all trying to keep him as a toddler, we're not letting go. But man, oh man...he so wants to grow up; to play baseball, to do schoolwork, to be like his brothers. And he's not letting us win.

Blast it all.



* yeah, yeah, I know there's always been hormonal components to things, we just know about them now...

4 comments:

Anonymous said...

I know its a long shot, but I hope theres a 100% recovery with the kidney :-)

kletois

Hobster said...

thanks bro...really. But it's more than a long shot...recovery's just not gonna happen. But things can be managed, treated, etc. There's no reason to think he'll have anything other than a full life (Lord willing, of course). But recovery?

You and me finally having that drink together we've talked about for years is a lot more likely :)

Lockheed said...

I'd gladly give him one of mine, if it would help, I think however that mine is prone to making rocks... if you don't mind excruciating pain every few days... it works otherwise. (I know, kinda like a car with an oil leak but hey...)

Anonymous said...

As a mom who has a son with diatetes type one...I understand. We just got out of the ICU...yesterday.
We have to let them go Hob. We have to let them go. They are in God's hands. That is not an easy thing to deal with, but with faith we can fight the fight!!!