Monday, July 30, 2012

Do We Want to Experiment.....

Babygirl has more than one nephrologist on board at CHOP.  We truly like them all, but have the most experience with Dr. A and Dr. B.  (Honest.  That's who they are LOL.)  Dr. B is the oldest of the team, and therefore most experienced.  But, speaking as an aging doc, experience sometimes overrides progress.  We get into an "If it ain't broke don't fix it" mentality.  Dr. A is the youngest (I think.  She looks incredibly young, but sometimes says things that make me guess she's about 10 years older than she looks).  With young comes progress, sometimes at the expense of experience. 

Each of us older docs have seen new meds work miracles.  We've also seen Vioxx cause heart attacks, and a dozen other meds pulled from the market when dire side effects are eventually detected when larger populations stay on those meds long-term. 

Babygirl's creatinine is 1.3 again.  The bounce is frightening in many ways, especially since it seems to be accompanied by a mild buildup of acid in her system, a subtle sign that Jorge's kidney may not be working as well as it should.  Her tacrolimus levels are bouncing as well.

There are a few choices.  There's another anti-rejection drug that has been used in kids.  It has some pros - less likely to damage a kidney long-term for example.  It has some cons - fewer skin cancers but maybe some risk of other rare cancers?  There is yet another that is untested in kids but very promising in adults.  Pediatric trials will likely start in November.  She qualifies for the study.

Obviously before we commit to either thing I need a lot of information.  Fortunately, all the nephrologists meet together to discuss each case.  Dr. A seems to be in favor of doing something.  Dr. B is more conservative.  And frankly, I have no way of telling which of them is right, and either of them would be more than willing to admit that the other one MIGHT be right. 

I agree in that we need to do SOMETHING.  I just have no idea what.

DeeDee

Sunday, July 29, 2012

Week Sixty-six - Re-entry......

Coming back into the "real world" after any kind of break can be a challenge.  We used to see horrible behavior in our foster kids after home visits, something which Hubby and I referred to as "The Re-entry Phenomenon."  Switching gears from one thing to another can lead to incredible glitches: The kind of can't-find-my-shoes-my-purse-my-KEYS crap that can make you arrive at work feeling like you've been shot out of a rocket.

Oddly, despite all of the above happening, and my arrival at work a bit late on Monday, the week feels as if it went fairly smoothly.  Oh, it was a full-moon kind of week, despite the fact that the moon will be full NEXT week.  At least MY keys didn't end up at the bottom of the elevator shaft (they had slipped through the lining of my purse and disappeared).  And any week in which Babygirl has no blood work or hospital visits is a good week by definition.

Hubby and I decided that since we drive past an amusement park every single time we are on our way to and from CHOP, and since Babygirl worships 'coasters, that we'd invest in season passes.  Babygirl and I broke them in today.

I can unequivocally say that, as much as I have adored roller coasters all of my life, my vestibular system no longer agrees with me.  Sad as it is, I may make it through this season with Babygirl, but I'm never going to be able to ride with her like I did with her other sisters. 

It was a good day anyway - it took six 'coaster rides before I felt like I was going to toss something, and by that time Babygirl was tired.  We left about two minutes before it began to pour, so the timing was excellent!

Doctor visit and blood work in the morning.  If it's hot, maybe we'll stop on the way home and use the water park!

DeeDee

Saturday, July 28, 2012

Mission Trip, Day Eight......

Saturday, July 21st

The journey home.  Thirteen hours on the road, straight to the church.  Lots of talk about what we did, why we did it, and why we want to keep on doing it.  Returning to real life seems a little scary, but doable. 

My final journal entry:

"I'm tired of talking about it.  God's in there somewhere, but I'm tired of figuring out where."

And you know what?  It's enough.

DeeDee

Friday, July 27, 2012

Mission Trip, Day Seven.....

Friday, July 20th

Final day of work.  I cannot now remember what triggered this journal entry:

"How can I trust You again when you let my baby get so sick?"

There is not now, nor will there ever be, enough of an explanation for me.  In the deep bedrock of my soul I know that the answer simply does not matter.  I also know that the answer may not actually exist, any more than there is a sensible answer to "Is red round, or square?"  For the Great Eternal, who stands outside of time, the answer is irrelevant.  Outside of time, she is not sick, and her sickness will represent the briefest imaginable portion of her eternal life. Outside of time, my memory of her suffering and losses will only stand in contrast to what she REALLY is, for "it does not yet appear what we shall be, but we know that when he shall appear, we shall be like Him." 

It's NOT enough.  But it will have to do.  We have work to finish. I manage to cry in private this time.

Heading to the home that we now all view as "ours," we map out the day:  Young people, dig the trench.  We'll figure out where.  Sabrina has a board to install.  Somehow yesterday she lost track of her skill with the drill, but by the end of the day, she's gonna have it or die trying.  Adults, finish the danged backer board and start the tile.  There is no way this can all be accomplished today, but we'll do all we can.

I took the younger folk (minus Sabrina, who was busy with a drill LOL), and we scoped out the land.  Where does the water come from?  And where would a trench successfully drain from and to?  While we are staking out a potential pathway, a neighbor comes and tells us that it is partly on his property.  We mark what he says is the line, and shift the trench route a couple of feet.  Our homeowner returns and disputes the line, but we convince him that it doesn't matter - the trench will do very well in it's new location.  ASP staff arrive, and concur with the location of the trench and we give the go-ahead for the digging.

The floor drags on.  The kids FINISH the trench.  There are only THREE of them digging, and it is 18 inches deep, 18 inches wide, and about 20 yards long.  Sabrina installs her board and moves on to framing a window, refusing to let anyone else in on the job.  The rest go to clean the van and sort tools into their owners' toolboxes.  They all finish, and by this time we have laid the first four rows of tile, starting with 4 in the middle and working out concentrically. 

At this point the home owner's daughter joins us.  She sits in the middle, handing out tiles, managing tools:  "I need a knife!"  "Got it!"  "Pencil?"  "Here you go!"  We are all so sticky from tile glue that we don't need to actually pick anything up, just slap a hand on it and it comes right along!  Taking off a pair of scissors requires manually pulling fingers back apart.  There is much, much much laughter.

It's time to leave, but there are eight people in that small room absolutely determined to finish even if it means no dinner.

And by some miracle, we do.  We did everything on the list except painting a room (it was too full of the things from the room we just finished!) AND dug the trench.  We laugh.  We hug.  We get stuck together.  We'd clap, but we can only do one each. 

Then it's time to leave them, Moody and Molly and Linda.  It's like leaving family behind. They thank us for what we've done.  But more than that, we thank THEM for letting us do it.  We all feel like we've gotten so much more than we gave.

Back at the center, we make it (barely) in time to eat - many teams, like ours, stayed to go the distance, so they delayed dinner.

After dinner is the final EG.  The one where we all share our "God Moments," the one most special moment of the week.  Eighty-two people listen to each other's stories.  No one is bored.  No one wants to leave.  I say that my God Moment was watching Ryan become a leader.  And it's true - the transformation from boy to man has been a gift to observe.  And I can say it without crying.

But my personal God Moments were all in the tears.  God reached out His hands to me each time a teammate held me through the struggle, each time a total stranger from a far-away church hugged me, each time a kind word landed in my Warm Fuzzy bag, and especially in the moment when I realized Babygirl's name was up on the prayer request board, and I didn't put it there.

It is true that God has no hand but our hands.  I went to lend my hands to God for a week. And I honestly went to escape my life. But I received love and support and relief from God through the hands of others.

Nothing has changed.  Not God, not Babygirl, not life.  Usually we return from these trips exhausted. But I feel lighter, rested.  Relieved.  Thankful.

DeeDee

Thursday, July 26, 2012

Mission Trip, Day Six.....

Thursday, July 19th

Thursday is the day of the mission trip when you realize FOR SURE that you are not going to be able to finish everything you wanted to. It's sometimes a depressing day. We started the day with a big hole in the floor that needed to be filled with 3 layers of material cut in 3 different sizes, with no true right angles.  This sort of thing takes patience.  Once the hole was covered, the entire floor needed to be covered in backer board (a thin layer of concrete-like flooring).  Before that could be done, areas of the floor with large gaps or uneven spots needed to be treated with self-leveling compound.  At one point I suggested that a 50-gallon drum of the stuff would be helpful.  Lynn suggested that it might not be enough.

While Ryan and Lynn fussed with floorboards and Morgan, Sabrina and Ezra fitted trim, Jackson and I went outside to organize tools, and to sort through the bin that each team gets as part of our standard equipment.  It holds a couple of extra hammers and screwdrivers, nail aprons, gloves, a spare reusable water bottle or two, wasp spray, Clorox wipes, zipper bags and other miscellaneous useful stuff.  Our goal was to inventory, make a replacement list and list things that we had wished we had that might be useful for next year.  We were sitting under our group's pop-up shelter to do this. 

We were pretty focused on the task at hand, when suddenly we heard our homeowner shouting at us.  Turning, we saw him running toward the house hollering something about a tornado.  At this same instant, the sky turned black and we got hit HARD by a sudden wind.  "We have to get the shelter down!" I yelled a Jackson.  We both grabbed the sides of the shelter to collapse it just as the wind gusted underneath it.  There was a moment when we could easily have become airborne and joined the Flying Monkeys that I'm SURE had to have been around somewhere.  A strut snapped, the structure more or less collapsed, and we ran for it.

Now, remember - this house has NO foundation.  It's merely sitting on the side of a rather steep hill, and we have the inside scoop on just how unstable it might be.  There is absolutely nowhere in this building that might offer adequate shelter in a severe storm, not even the bathtub.  Trust me.  The kids are coming out of the house to try and collect stuff from the backyard.  I herd them back in and order them to stay inside just as the heavens open and drop all the water the entire Midwest has been praying for directly on the house.  I go to the front of the house and our homeowner is calmly sitting on the front porch. 

"Moody, don't you think you 'd be safer inside?"  He told me of the one time there had been a tornado in the 'holler' below us.  He and his wife had sat on that same porch and watched as it traveled down the valley.  He said that that was the only other storm he'd ever seen that started at the speed and force this one did.  I decided to go back inside, and had a Dorothy Moment when I was almost unable to open the front door against the wind.

We decide to keep working inside, and actually end up staying an extra hour until the rain ends.  The backer board is almost all down,  but there's still some to fit in the odd spots, and then we still have to tile.  We are out of smaller jobs for the younger hands, so we'll be asking tonight if we can start some of next weeks' work.

Back at the center it was Culture Night, and we heard an excellent singer and teller of folk stories.  Our church went to Dairy Queen (twenty twisty miles away), and our team came back to do our chore of the day - sweeping and mopping the main hallway, and grounds pick up.  (All the teams do chores, every day - dishes, bathroom or shower cleanup, etc. It allows the center to operate more cheaply so more money goes to home repair.)

My journal for the day lists only a bunch of two-word phrases - just enough to jog my memory for this post.  The only phrase I had trouble working in was "mouse poop." 

DeeDee

Wednesday, July 25, 2012

Mission Trip, Day Five....

Wednesday, July 18th

One of the challenges of leading (okay, but I'm not the leader!) a team that is supposed to be at least half youth ages 14 - 18 is finding ways to keep the entire team productive.  Sometimes it takes two or three experienced heads to puzzle out how to solve some tricky bit of construction, like "Can we support the entire house on this six foot long foundation?"  While that puzzling is occurring, there are four (usually) inexperienced people trying to figure out what they are supposed to be doing with their time.

One of the hallmarks of good leaders in such a situation is that they figure out ahead of time what can be done by those inexperienced hands.  One must also make sure that those inexperienced hands have and know how to use the tools they need for the job.  It's almost guaranteed that it will take them twice as long to do something as it would us, but like those horrible word problems ("If one man can paint a room in 7 hours and another can paint it in 4, how long will it take if they work together?"), the answer always is, "Faster than either could do it alone."  It's great to finish the puzzling and find that something else has already been finished as well.

One of the things I saw as my 'job' on this trip was to mentor Ryan in his first year as leader.  Every now and then I'd ask, "What's that noise?"  He'd answer, "I don't hear anything."  "Me either.  Go find out why your team isn't working!"

He gave me a note in my Warm Fuzzy bag that said, "Thanks for helping me be a fearless leader."  I got all warm and fuzzy.  That, in case you were wondering, is the purpose of the Warm Fuzzy bags.  No Cold Pricklies, and NO Hot Spicies.

We had our picnic a day early this year.  Our homeowners came, and our whole team had dinner with them.  I'm proud to say that the whole team stayed with them for over two hours, listening to them tell stories and make jokes.  My journal entry for that evening:

"She is 62.  Oxygen, wrinkles, and comfortable in her skin.  He's 68, up at 3 AM to deliver papers to earn $50/week. Together they raised six kids, have six grandkids, and six great-grandkids.  They tell stories of their life together; good, bad, joys and sorrows.  And they still look at each other with love and laughter in their eyes.  He can still make her dance."

And Babygirl's numbers are better.  No admission this week.  It's a good day.

DeeDee

Tuesday, July 24, 2012

Mission Trip, Day Four....

Tuesday, July 17th

Up at 7 for devotions at 7:15.  Each group takes turns.  Today's group uses "Call Me Maybe" to emphasize how Jesus' followers left immediately when called to follow him.

Today we are finished making forms for a partial foundation under 'our' room.  We had brought nine 80 pound bags of concrete with us in the van (oh Lord please bless the Goose - her springs are FLAT), along with some OSB (3/4 inch thick rough plywood flooring material).  We had to fit kids in over and under everything.

Our site has a cement mixer - very unusual.  Usually when we do concrete we mix it bag by bag in a wheelbarrow, stirring with a rake or hoe.  Since the only flat place to set this up is considerably downhill from the entrance to the house, we work as a bucket brigade.  Ryan and I mix concrete and dump it into 5 gallon buckets (about 1/3 full is what everybody can carry).  Lynn waits upstairs to make the concrete fit the mold.  Everybody else has a bucket and just keeps running in circles.  It takes us just over one hour to pour over 800 pounds of concrete.

I was, as always, wearing Mason's bracelet, in honor of baby Mason, who died of SIDS this past January.  His picture pin was also with us in the van.  Here's my journal entry for that day:

"Mason was with us today.  He's young for a mission trip, but he's always here with me.  His baby blue bracelet, along with Babygirl's Make-A-Wish band, got completely covered in concrete today as we worked to shore up a sinking room."

I also made note of my "clown fall."  At 54, I assumed I was too old to do a backward 360 roll down a steep hill.  I was mistaken.  I can do it. 

My only other note says, "Peace."  My heart was truly peaceful all day. 

DeeDee