update/some renal, some not/warning - LONG

[Guest guest]

I've been meaning to check in for the longest time, but finally have a few

minutes to do so! 's got a performance/cast party, so I've got a bit

of time. For the new people, does not have IgAN, but MPGN, which is

a generally a far more aggressive disease than IgAN. It is very rare, so we

hang here with you guys! What follows, is a rather long post - which will

hopefully be helpful to the new parents.

School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was

supposed to be a B+, but -the-negotiator managed to get the teacher to

upgrade it to an A- (where he gets those skills, I don't know - however

I've begun to take lessons from him. He tells me (and he's probably right)

that I escalate into nastyness too fast). ly, I don't give too many

hoots about grades. It's like once his kidney problems were diagnosed, he

turned into this straight A student... I'm sure there's a connection there.

Right now he is spending 12 hours/day at the theater. The summer began with

a bang when at the veritable age of 13, they let him stage manage a

production of 1001 Dalmatians (I HATE DISNEY! However, that's another

story). This was the first time Disney granted rights to an amateur

theater. From there, he was cast as the Grand Duke in a production of

Cinderella (closes tomorrow) - in which he really helped carry the show.

He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week)

and is auditioning for a tiny part in Macbeth later in the summer. Very

unexpectedly, I was invited to join the board of the theater. 's

been involved with this place for 5 years. Other than helping in the

costume shop periodically, I've been very much a drop-and-run parent so it

rather surprised me. I'm feeling plunged into the miasma of local city

politics - which is perversely fascinating.

In the very few minutes that he's not at the theater, 's working on

learning some geography with an eye to participating in the National

Geographic Geography Bee next year. What is the capital of Lichtenstien?

Where is San Marino? What mountains run down the Italian peninsula? What

mountains are in northern Italy? He may not win (possibly too Eurocentric),

but we're having a blast with this.

Kidney numbers are holding more or less stable. Got labs today. C3 (an

MPGN thing, not an IgAN thing) went down (this is the 3rd month of

decline), which is a little worrisome, but continues to be low-normal. We

went through this before when his C3 values declined all fall, but bounced

back in the winter) so it's not a super-big worry. Protein-creatinine

ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in

the past, this is good. The horrible times of two years ago seem behind us.

I know they'll come back, but right now we're just not thinking too much

(well, not more than several times a day) about it.

In closing, to new parents, kidney disease is NOT the end of the world.

We've been at this two years. Parts of our journey are nowwheres as

glowing as the current report (like the days when he was too anemic to make

it through a school day). You find out how much matters - and how much

doesn't. And in the end, (for us, anyway - knock wood), at two years - not

much has changed.

Cy

PS - this post was interupted by a phone call. " Mom - this is a good party.

I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in

an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up

at 10 " .