Worth Waiting For

The efficacy of baptism is not tied to that moment of time wherein it is administered; yet, notwithstanding, by the right use of this ordinance, the grace promised is not only offered, but really exhibited, and conferred, by the Holy Ghost, to such (whether of age or infants) as that grace belongeth unto, according to the counsel of God's own will, in his appointed time.

On June 6, 2004, Rev. David A. Bass applied the waters of baptism to our son Arnold (he'd be the one in red there).  The grace offered and exhibited to him then was conferred to him recently.  This morning, he made his public profession of faith and was made a member of the fellowship the rest of us joined last year.

Again, seeing this was a privilege I don't deserve.  Helping him to this stage has been a blessing (though, honestly, not one I always remember to see as such).  He took a big step in improving his baptism this morning, but he has many others before him, Lord willing.  Hopefully, his mother and I can continue to help him in this lifelong effort, but our hope and trust is that he who began a good work in Arnold will bring it to completion at the day of Jesus Christ.

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This is just me talking about my convictions.  This is not a reflection of the beliefs of the Fellowship to which I currently belong.  In the incredibly unlikely event that any other member of this Fellowship is reading this, do know that I am not seeking to foment any type of rebellion against the statement of faith there.  If God, in His mercy, grants a change in the Fellowship's position on the sacrament, I will welcome it, but I will not have had a hand in it beyond my prayers that He would sanctify the body by His truth.  

A Decade of Mercy

I'm about to head to bed and by the time I wake up, this little dude's odometer will have turned, and he'll be in double digits.

Sure, my youngest hitting the decade mark makes me feel older than any of my own birthdays could. But the important -- and mind-blowing -- thing is that this one has made it this far in pretty good health and spirits. Sure, there've been more hospitalizations for him than the rest of my little family combined (more than double, actually) -- but none have been truly worrisome, really they've mostly been expensive annoyances. (for the skinny on this, if you're new to the saga, click here)

We don't owe this to his own strength and perseverance (which he has in spades), to the care of his wonderful mother, his passable father, his supportive siblings (who are really his most devoted caretakers when it counts), the grandparents and extended family who are always ready to drop everything and help, his two excellent doctors, or anything else merely human.

It's the mercy and care of Our Lord, who by His providence has given him better health, greater strength, and better kidney function than anyone could've expected. But this covenant child, recipient of the promise of God is seeing His God's hand at work in his life. He, more than many his age, can see that (in the words of Thomas Watson) "We are kept alive by a wonderful-working Providence. Providence makes our clothes to warm us, and our food to nourish us. We are fed every day out of the alms-basket of God's providence. That we are in health, that we have an estate, is not by our diligence—but God's providence."

So tonight we celebrated the anniversary of his birth. We celebrated the time we've had with him, and the time we look forward to. But most of all, consciously or not, we celebrated the Triune God's care for him.

Gracious Lord, I thank you for our little Arnold, and beg Your continued care for his health as I plead for You to draw him to a saving knowledge of You.

And son? Happy birthday, and Lord willing, many happy returns.

Happy Birthday, Buddy

Happy Birthday, Arnold

This ol' ball of dirt has circled the big fiery thing in the sky 6 event-filled times since you first made your appearance. Thanks to you, very little bit of that time has been dull. Frequently funnier, always kinder and sweeter. I have no idea what the next several rotations have in store for you, but trust that you'll meet them with your typical aplomb and cheer.

Looking forward to it.

Arnold Kidney Update

Had our regular checkup with Arnold's nephrologist today, on the whole, things are very positive, and look good for now. He's recovered from his recent hospitalization, and bout of Swine Flu well. Everything's about where it should be.

I did learn a couple of things, both about the future and about kidney treatments in general. First of all, the doc reported that his hemoglobin was good. Am pretty sure this is the first time he's bothered to mention that--maybe he's muttered something mostly to himself about it a time or two. He went on to inform me that when his kidney function worsens (about 25% efficiency or so), he'll need a weekly injection to boost that. I'm getting it on the record now that I hereby volunteer TLoML to give that, assuming it's not something a professional has to administer.

His growth rate is slowing, and assuming it continues the way it is, within a year or two we're going to have to talk about growth hormone. Apparently, and this was news to me, it's not that kidney patients don't produce the normal amount of growth hormones themselves. Rather, there's something also produces that blocks the hormone. So, (assuming he gets the hormone) he'll be given a dose equivalent to that given to someone who doesn't produce the hormone on his own, which will be enough to overcome the block. This will come in the form of daily injections. Please see the previous paragraph for my stance on the administration thereof.

His kidney function had been thrown off by the infections/dehydration that were behind his recent hospitalization, but the lab results show that they're back to where they were before. In the past, the doc's been able to do a quick and dirty calculation to estimate kidney function based on those results. But thanks to that pediatric study we've talked about before (here and here, for example), that calculation has been thrown out. The doc was sorta grumbling about that (a diagnostic tool he's used his entire career has been tossed) and sorta informing me about the use of that study. Apparently, they've been able to adapt the calculation to come up with a way to estimate function for girls, but they're still working on it for boys, so his usual rough guess is rougher than normal. We're at 35%-ish. He didn't tell me what the range on that is, but in the past it's been +/- 15%.

The last thing I wanted to mention has nothing to do with Arnold's condition, but when we talked about the hospital stay, I mentioned that the insurance company was hassling us about paying for it. He was incredulous about that and volunteered to help with the appeal. Then he said something about at least when dealing with an insurance company there's a person you can talk to and "if it gets to the point it's the government deciding these things, it'll be a wall." I see him briefly catch himself before finishing his thought after saying the word "government", but then he must've decided he didn't care about opening a potential can of worms and spoke his mind. I know there are exceptions, but I've yet to find a medical professional in favor of the legislation before Congress.

Unscheduled Absence

So much for that streak...Sorry I've been away from the blog, Arnold's been in the hospital since Friday, so obviously, not been very conducive to blogging. Nothing serious, I'll post some details in a day or so. Maybe.

Anyway, he'll hopefully be released tomorrow, so I'll try to get back on this thing by Wednesday.

Little More on the First Day

All the kids reported that they had a good day--despite the school bus for the elder 3 being 50 minutes late...ugh. Am sure WonderMutt and I didn't look too suspicious standing on the sidewalk in front of a neighbor's house for almost an hour.

The oddest summarion of the day came from Arnold, who after talking to us for a couple minutes about his day reported, "Oh...no detention!"

I can't tell you how relieved I was to hear that after the first half-day of kindergarten, he felt he had to assure us that he hadn't misbehaved to the level of serving detention.

(oh please, don't let this be a harbinger)

Just had to Share this One

This is one of those, I have to write down so I'll remember it in the years to come.

Arnold and his sister went camping and fishing with my parents this last weekend--because of the rain, "camping" is loosely defined as sleeping in sleeping bags on the living room floor. Which explains all the grass underneath Arnold's feet in this picture.

Of course, since they were camping, they had a cookout or two, and roasted marshmallows. Towards the end of the roasting, Arnold declares that he's making one for his dad, which probably elicited it's share of chuckles, and they tried to move on. But he's got this way about him that makes his parents do things they normally wouldn't do--making Grammy very susceptible to his whims. So, she wraps it in a piece of wax paper and plastic wrap.

And he kept it.

Sunday when he came home (after the excitement of meeting Wonder Mutt had died down), I was given this clump of plastic wrap around something. I could tell he thought he was being thoughtful and generous when he presented it to me, so I thanked him and hoped he'd explain.

No such luck--apparently the nature of the clump should've been obvious, so I thanked him, and he glowed. Thankfully, Grammy was still around to explain what I'd been given.

How thoughtful is that, really? Only time anyone's ever bothered to make me a roasted marshmallow and then keep it for a day.

Incidentally, it tasted great, still had some of that fresh off the stick smokey taste to it, too. :)

Arnold Update

Had our regular checkup with the kidney doc today. Everything was in the good to excellent range on the blood test front. Kidney function was at 35-40%, but the doc's not worried--hydration level alone is worth a few percentage points. The doc took a minute or two with the other kids to drill them on anatomy, and teach 'em a little bit (that was fun). And I learned the phrase "the third kidney." Educational for all involved.

Overall, very pleased.

The big news is, he started reading this week. Yeah, if he was less stubborn, he'd have done it in February. Yeah, he's older than his siblings were when they started. But, really, who cares? The kid's on the verge of literacy.

Couldn't be prouder.

...oh yeah, and this weekend, he started whistling. He's pretty good at it, definitely better than any of his siblings (either at this age, or currently). And he knows he's good, so he does it a lot.

Absolutely irritating.

Back for More of the Study

We had Day 2 of the big pediatric kidney study yesterday (see this and this for last year's). While we cooled our heels waiting for things to get going, Arnold got a little goofy and we captured a bit on video.

As I recall, this is the first time I've posted my own video here, so who knows how it'll work:

Once I'm at work, I'll try to update this post with further details.

Arnold Update 12/3/08

Visit to the nephrologist was a short one, and on the whole positive. Doc was satisfied with his grown--1.5 inches since July and 2 pounds (2 pounds?!?!)--actually, he called that "good." Most of the things we look for in his blood were good. The big one, sadly, went up a bit; his creatinine was at 1.2 giving him a 44% kidney function (+/- 4%), so he's "slipping a little" on that front. We're still more than 20% from the point where we start shopping around for his next kidney.

We've also scheduled the next of those all day appointments for early January, so, there should be more info sooner than normal.

Incidentally, that pic was taken a week and a half ago while we were waiting for the lab to draw his blood. The smile was a little bigger initially, but he had to hold it longer than expected cuz I hit the wrong button on my phone. He was literally bouncing up and down in the waiting room.

Someone Was Looking Awfully Grown-Up Today

so we snapped a quick pic:

Sometimes You Just Can't Win

conversation from this morning:

Mom: I can't believe my baby's starting Kindergarten next week.
Arnold: I'm not a baby. I'm a kid.
Mom: Sorry. I can't believe my littlest kid is starting Kindergarten next week.
Arnold: I'm not a little kid. I'm a big boy.
Mom: oookay. I can't believe my youngest big boy is starting Kindergarten next week. [Pause for comment, which doesn't come] Am I getting old, or what?
Arnold: You're getting old.

Arnold Update 3/24/08

Well, we took Arnold in for a visit with the nephrologist yesterday. Very encouraging visit. Not only was the news on the physical front good, but Arnold did a great job socializing with the doctor (who seemed to go out of his way to try to chitchat with all six of us for some reason).

Arnold's kidney function was calculated to be 51%-46%--now, both of those figures could be 15% lower, but I don't remember the last time that 50% was in the range. Even stranger/better--was his growth charts. Now, I'm not exactly sure why he wasn't a bit more precise, but the doctor told us that Arnold's height was somewhere between the 25th and 50th percentile. 50th percentile!! I honestly don't think he's been above 30th...maybe 25th...in his whole life. Kid still seems freaky short, but he's growing like crazy.

The kid's smart as a whip (Doc kept warning his brothers about that), and still the funniest arrow in the quiver. He communicates more through facial expressions than the rest of us combined--like Rowen Aktinson on speed. Which can make it very difficult to discipline/correct him when he needs it. He's dying to start his formal education--which he'll do in about six weeks. I predict I'll learn more initially than he will.

Thanks for your continued prayers and interest. Keep it up :)

Mr. Chesney's youngest critic

(quick throwaway post just to help me remember my blogger password)

Arnold's sitting in my desk chair, listening to some iTunes whilst I puttered this afternoon. He turns to me with his unique "confused face" where he scrunches up half his features in a way that's impossible to describe and probably equally impossible to capture on film and objects, "When the sun goes down...it's dark."

I decide not to explain how that's sorta the point and try to distract him with a Backyardigans track instead.

Who knew he listened that closely?

Arnold/Kidney Kid Update

March 5, 2004	March 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...

It was an interesting day....

Thanks to the lovely winter weather I recently whined about, the Interstate was a parking lot, so I took some back roads in (and not the back roads I'd have picked if I'd planned on it), making us 10 minutes late from the get-go. Not an entirely auspicious way to begin.

First thing when we get there is that we find out that instead of sending me the prescription for the Valium, they went ahead and filled it for us, so he got a little something to take the edge off. But that's not all, they have this cream (don't remember the name, don't care enough to look it up) they put on his arms to numb them. Basically just trying to make sure that he doesn't start the day cranky, annoyed or in pain (or all of the above). Then we get to wait for an hour while these things kick in. Thankfully, the hospital that we're doing this in has a great Children's Specialty center--and by great, I mean they have a large and well-stocked play area.

We then saunter over to the pediatric unit of the hospital--by this time the Valium's working and Arnold's a little buzzed, nothing major, but definitely in a good place. They're using the pediatric unit to insert the IV's for a couple of reasons: 1. the nurse in charge of the study is squeamish about poking kids, especially when there are pros available, and 2. they don't want the subject angry at the people he's spending all day with. (they're very concerned with the subject's state of mind--which is fine with me, considering the subject in question). Like I said before, Arnold's a pro at this stuff, but they bring in a legion of people to do insert the IVs. At one point (in addition to the three of us) there was his nephrologist, the nurse in charge of the study, two RNs, two other nurses, and a "Child Life Specialist" (whatever that is, but apparently you have to have mad bubble blowing skillz) in the room to make sure everything went smoothly. I almost volunteered us to leave the room to alleviate overcrowding. He got through that okay, one quick "ow" per IV, and then we went back to the center.

We know Arnold's small, but every now and then we get a healthy reminder of it. On the pediatric unit, all the nurses guessed that he was "about 2." When people who spend all day dealing with kids are off on that by 16 months, you know he's short for his age.
They fed some contrast dye into one arm, and then removed that IV. Then they took blood samples at 10 min., 30 min., 1.5 hrs and then 5 hrs. to see how the kidneys filtered it out. Then, like I said before, there were typical physical stuff. The early blood work results were good--hormones, sodium, etc. are stable, height, weight, etc are okay--but we won't have any results from the major tests for about a month.

The highlight of the day was, of course, watching Arnold go through this all. He was a little out of it, yet mostly there thanks to the Valium. But watched everything that happened to him, paying very close attention to every step of the process with the IV insertions--despite the best efforts of the woman blowing bubbles. He quickly picked up the procedure during the blood draws, and started talking the nurse through the steps. He was very chatty, particularly after the Valium wore off. Kept talking about "the red bloods" coming out of his arm, and going from the syringe to tube. He really seemed to have a good time. By the end of the day, all three of us were pretty drained, but his spirits kept up. But he was still plenty ready to get that last IV out, and be able to put both arms in his jacket (next year we'll take Frodo's for him).

Incidentally, the nurse was telling us about some conversations she's had with other centers for this study--not everyone does the IV thing ("for the kids' sake"), instead they just poke their subjects each time. How does that make sense? What kids want that? What kid's veins are up to it?

Then 7+ hours after we fought our way to the hospital, we got to fight our way home, in time for me to collapse for a few before work. Thankfully the next appointment should only take 3 hours--with no IVs involved. It'll be focusing on psychology, development and whatnot.

This has the makings of an interesting day

So Arnold has a big day today. He's going to be part of a nationwide study on pediatric kidney problems. His involvement will take part over the course of four years, starting in abouuuut four hours.

Today's festivities kick off with him getting an IV put in his hand--they were supposed to give us a prescription for some Valium to help him deal with that, but that didn't happen. He's had about as many needles stuck into him at this point in his life as I have, and generally does okay, so it shouldn't be too bad--but I'd feel better if he was relaxed. Anyway, that IV will be used to get 4 or 5 blood samples over the course of the day. He'll also have a decent physical, his regular nephrology checkup, and some other things. Once all the results are in, we'll have a much better idea of how he's going than we've had since...well, ever.

In a couple of months there'll be some psychological tests (that should be fun), and an annual repeat of today, along with other assorted fun times along with way.

But that's then. Before us today is trying to come up with ways to fill the time between blood draws and exams w/o TLomL, myself or Arnold doing violence against each other. Thankfully, the Princess, Frodo and Samwise are spending the day with some friends, or I know there'd be bloodshed. :)

Arnold (formerly known as Kidney Kid) Update 3/22 (posted late)

Had another visit with Arnold's nephrologist this week (backstory links here). He's still pleased, but the kidney function is down to 48%. Not a huge drop, but a drop nonetheless. However, his great-grandma was quick to point out that her nephrologist tells her that kidneys have good and bad days, so perhaps the blood was drawn on a bad day. Basically the doc thinks we're in a period where he'll be hovering in the 50%ish area for function--bouncing around that number for awhile and then getting worse. No guess at a timetable at this time. Still, he's pleased and isn't asking us back for 4 months...so no worries at this time.

Part of the reduced function is just due to growth--he's putting on more muscle, etc. 'Tho even there, we're seeing some slowdown there--he used to be in the 50th percentile for head size and height--now in the 25th. Still in the 50th for weight, tho'. However, the nephrologist tends to go with quick and dirty measurements, so I'm not putting too much stock in these figures 'til he sees his pediatrician in a few days.

Otherwise, he's doing well--still a bit lagging in the talking department, but he's making progress. His temper is developing quite well, and his puppy dog expression is, too. On the whole, still good natured, loves to help his "Daa-ee" with a few daily routines, and jumps out of his skin when his mother comes home.

So that's the state of the kid. Thanks for your interest and prayers--they're working.

Notes on the Dad Front

First things first: The Kidney Kid shall henceforth be called Arnold. Just doesn't seem right to tag him with a nickname based solely on his disability. Okay, so naming him for a precocious child-actor who came to fame because of his jowliness and his impaired grown due to kidney disease pretty much does the same, but hey...he was funny. Next goal: teaching The Kidne...er, Arnold a catchphrase or two.

Secondly, Arnold turned two yesterday! Have paused to meditate on God's grace throughout those two years a lot over the last few days. When he was 2 weeks old we expected to go in for a major surgery about this time. Mercifully, it's not now (tho' that would give me an excuse for being so far behind in school...ah well, can't have everything, eh?)--sure, it's looming out there somewhere. But when he's older, can be talked to about what's going on, when he's stronger. (For newer readers who have no idea what I'm talking about, scanning this, this, this, this, this, this, this, this, this, this, and (finally!) this, --in order--should help [thank you, Technocrati for finding those for me!]) But he's walking' working on talking' he's got a great personality, a fierce temper that's a walking monument to his father's depravity; he idolizes Frodo, loves the Princess and Samwise; and other than the whole only having .25 kidney thing is very healthy. We had too many dark nights in the beginning, but for the most part now never think of the kidney nonsense and just enjoy him. Truly an act of providence (and God restraining our hearts from panic and paranoia).

Not much to say on the Princess front. She's adorable, she can only speak in giggles (or so it seems), has her Daddy pretty much wrapped around her finger, and is bursting at the seams to try her hand at reading, writing, 'rithmatic, and particle physics.

Samwise is..., well, Samwise. He's addicted as ever to videogames, a little slow on the thinking through things part, loyal to a fault, normally cheerful as all get out, frequently off in his own little world, and a voracious reader.

I actually pulled out the old "if everyone jumped off a cliff, would you want to?" line on Frodo yesterday. He laughed. He thought it was hilarious. Oh my, I have so much work to do with this one. Don't know where to begin :)

Notes from the Sick Ward

Had really planned on a blog-splosion while I was on break. But got fairly distracted by several things around the house, reading for the Winter Term, and now a cold from h-e-double hockey-stick--which has taken out the whole household (tired would probably insert a covenant-head joke here, but it started with the Princess and then moved on to the Kidney Kid, which is a shame, because his joke would be funny).

Took the Kidney Kid in today, got a steroid shot to help his croup. Seems to be working. He's actually sleeping tonight, as is mommy. That's a major plus.

Have gotten some intersting reading done--many books started, none finished yet. Depending how tomorrow goes, I could have a few knocked off. Have got more sleep in the last few days than I have in the last few months. Very strange experience.

Hopefully will have a few things to say in the next couple of days. And next week--since I will have gobs and gobs of stuff to do, expect me to blog about a bazillion words a day.