Machen Update 3/22 (posted late)

Had another visit with Machen’s nephrologist this week. 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

Secondly, Machen 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.

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 Owen, loves Carleigh and Calvin; 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).

Machen Update 9/7 (just written late)

Oops. Forgot this. Saw Machen’s specialist on Wednesday–good visit all around. Got some concrete advice on his diet, which isn’t nearly as restricted as we thought it was from the vague statements he’d given us before, like “limit X.” Well, how much is limited? And he was so distracted with things like making sure the kidney was actually working, he’d not get around to answering. But we must’ve asked at the right time this visit, because he sat right down and wrote a little list for us. Phew.

As for the kidney–everything’s looking good. At this age the best indicator of kidney function is growth, and he’s doing fine there (sure, he’s the size of Owen when Owen was half his age…but hey, just keep thinking Gary Coleman, and the kid’s doing fine). As an aside, Machen just shot his father a look that could’ve gone with a “What you talkin’ about, Willis?” line. The blood levels are good–his creatinine, which is what most eyes are on, had actually gone down. This was fantastic news, as the doc had pretty much concluded that he had leveled off and would only get worse from here on out. We got a new factoid this time–doc crunched some numbers and said his kidney was functioning at 51% of what it should be at 18 months (+/- 5%). As bad as that sounds, the doctor was very pleased with that number.

Other than that, he’s jabbering up a storm and climbing everything he can think of. We’ve never had such a climber before–kid’s just fearless. Dad figures he knows he’s got this chronic illness and figures he has nothing to lose. Mom figures her husband need to spend a little more time in reality. Machen is spending more and more energy trying to be one of the gang with his older siblings, and frequently succeeds. Owen has taken to spending a good deal of his free time just hanging out with his youngest brother, it’s very fun to watch the two of them.

Oh yeah, lastly, we have another baseball fan in the house. One of his favorite things to do is check out mlb.com on his daddy’s lap. And last Friday while everyone else was excited about the game, he lifted his arms above his head and yelled “Yankees!” Truly, a proud moment.

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

Kidney Kid Update – 3/2

Just got back from the kidney specialist (the traditional way most people celebrate a 1st birthday, eh?). The Doc is still very pleased with how things are going for him–was really impressed with his development in things like standing and whatnot (he had been going to physical therapy for awhile, but graduated recently). His blood levels were pretty much the same, so no medicine or dietary changes. ‘Tho he has to keep his dairy intake low, ditto for red meat (ohh, the HUMANITY!!). All in all things are going well there.

He will be seeing his urologist in a couple of weeks and we’ll likely be scheduling a surgery then. So please pray for that.

Aside from the medical issues, everything’s going great, praise the Lord. He’s standing for periods of time, crawling allll over the place, jabbering a lot, and will even glance my way when I tell him “no” before going ahead and doing whatever I’m telling him to stop. Sadly, during our little birthday celebration today, we discovered the he doesn’t like brownies…which could be a sign of serious psychological problems 🙂

Again, thanks for all your prayers and interest.

Kidney Kid Update

Another specialist visit done. The Doc’s very pleased with how things are going for him in general. His growth, etc., could be better, but he’s within acceptable levels. Blood pressure’s on the high end of normal, but given that we’re giving him extra sodium to help with growth, it’s expected. His lab work is good–the creatinine level in his blood appear to have leveled off, which means this is as good as he’s going to get. Doc figures he’ll stay at this point for about a year, and then start to go downhill. Personally, I’d gotten used to nothing but improvements, and this news was a blow.

But as his Great-Grandma reminded me, we’ve got to get through this for him to get better, which is the big goal, right? (thanks GG!) From the get-go this has been one of the three things we’ve been looking for to determine transplant time. Where he levels off, how long he levels off for, and how quickly he drops off from that. One down, two to go. Hopefully it’ll be awhile.

He’s developing quite a fun personality, has a great laugh, has the annoying tendency to grind his teeth (shudder), loves pulling CD’s off their shelves and playing with electronic equipment, will be crawling all too soon. Aside from the drama, he’s really the easiest baby we’ve had.

Again, thanks for all your prayers and interest.

they sure grow up fast/Kidney Kid Update

Took the Kidney Kid to his doc yesterday. His blood levels are astounding–it’s possible that we could be looking at 8-15 for a transplant now. That’s right, I said 15!!!!!!!! We’ve gone from 2 to maybe 15 in 6 months! This is too wonderful. Thank you, Lord! Thank you readers for all your prayers.

Now that he’s added solids (and I use that term in the broadest sense possible) we’re in the fun zone where we have to be careful he doesn’t get too much liquid in him and cause all sorts of problems for that .75 kidney, but hey…there are worse things to deal with.

Also, yesterday he mastered the front-to-back roll. Then he went on to combine it with his back-to-front, and is now mobile. Granted, it’s not as cool as SpaceShipOne, nor will it win us $10 million, but it’s pretty neat. 🙂

Kidney Kid Update

Well, today was the least interesting kidney doc visit we’ve ever had…guess that’s a good thing, right? He took his pulse, read over the last test results (astoundingly good) and said, come back in 3 months! (okay there was a little more conversation, but not much)

Other than that: he’s rolled over once, but keeps getting tripped up by his shoulder when he tries it again. Teeth are in the near future. Pretty much normal stuff. He’s a lot of fun (‘cept at times like the moment when he’s yelling for no reason…)

update

Haven’t said anything in awhile. Been thinking of stuff to blog. Just haven’t gotten around to it. Would like to thank all of those who’ve read this stuff about the boy and have been praying.

One thing I’ve found lately, having a son who has a “chronic illness”–you sure learn how to take things One Day at a Time (without the Christy Lane!). Jesus knew what he was saying (not too surprising) when He said that each day has enough trouble of it’s own.