Week Seventy-four - Well Enough to Be Sick.....

This week's lack of posts isn't because I have nothing to talk about.  There are TONS of things going on that would make good stories:

My mom, after numerous phone calls to me (on such varied subjects as needing a cat groomer, needing a phone book, and needing faster responses to her messages) and my brother, woke him up at 1 AM because she needed assistance - with opening a can of sardines.

My office is surviving a transition in leadership.  LAS - we'd miss you but we know you aren't going far!  And A - good luck.  You'll get used to the insanity.

Babygirl has signed up to return to the swim team after a nearly three year hiatus.  We're hoping the school doc agrees that it's a GREAT idea.

My niece, after a scheduling glitch that postponed her C-section by 24 hours, was safely delivered of an absolutely BEAUTIFUL little girl. 

But it's too exhausting to think about it.  We've all been hit by a cold. 

"Hit" may be a touch of an understatement.  This thing grabbed us by the throats, rammed snot up our noses and then threw us out into bus traffic.  We are all achy, sneezy, wheezy and dopey.  And how, I might ask, did this cold manage to strike Citygirl when she lives four hours away??  She called while on her way, and croaked, "Is it safe for me to come home?  I have a cold."

Well, aside from the fact that we may end up trading germs and surviving two completely DIFFERENT colds, yeah, it's safe.  With Babygirl's neutrophil count over 1000, we're safe. 

And that, despite how crappy we feel, is completely awesome.

DeeDee

It's Always Good News/Bad News.....

This morning's counts are in.  Drum roll please.......

Good news first:

She has neutrophils!  I was sincerely hoping for an increase, and concerned about the possibility of a decrease.  I was especially NOT wanting the kind of decrease to say, 505, where technically she'd be over 500 and able to go to school, but low enough to utterly freak me out.  But the count is 1005, not technically normal, but a 25% improvement over last week.  It will take a couple more weeks of tests to prove this is a trend and not a fluke, but I'll take it.


And the bad news:

Her creatinine is 1.0.  It's not terrible, but it is higher than the last two weeks' reassuring 0.8.  Again, time will tell if this a trend or a blip, but I hate seeing UP on the creatinine almost as much as I hate seeing DOWN on the neutrophils. 

We've landed in the hospital for each of those problems. 

CHOP hasn't actually called yet.  I got the numbers from the local doc, bless him.

DeeDee

Yesterday's Results......

Yesterday's visit with the doctor was same old/same old.  Blood work. Breakfast.  Weight (stable) height (unchanging) vital signs (acceptable).  Dr. A came in and went over what we have available at the time of the visit:

Bone age (determined from an x-ray of her hand from last week, a couple of days after she turned 13) is 15, two years ahead of what it should be.  Since we really do know her actual birthday, and there isn't much doubt that she was 23 months old or LESS when we got her (based not only on her stated birthday but on her size and developmental characteristics), it's interesting to see an x-ray imply that she is aging faster than expected.  We discussed it, but the conclusion is that whether or not it is something to worry about, the bottom line is that it can't be changed.  Babygirl is, therefore, more or less done growing.  That means that she, the only one of my kids who might have actually exceeded my 5' 9", is going to finish up being 5' 2", or 3" if she's lucky.  Kidney disease stinks.

Cholesterol is high, but they still haven't gotten the lipid results from April of 2011 that our doc did the day her original diagnosis was made.  I know it was done, but I'm sure I never even thought about asking for those results.  The kidney failure was the only thing we focused on.

Creatinine is 0.8 for the third time in a row.  The kidney likes Rapamune.  And so do we.  A couple of mouth ulcers?  No biggie.

Neutrophil count is down to about 750.  Ulp. It may be from the mycophenylate, but if they cut the dose more she'll probably reject again.  Okay for school.  Watch for fever.  Avoid sick people (um, okay, sweetie - run like hell if somebody at school sneezes or barfs on you!). Repeat locally next week and the 'team' will discuss whether or not Neupogen is a good idea.

See you in two weeks.  Or sooner, depending.

She feels great, so it's a good day?

DeeDee