Thursday, August 29, 2013

Third year, Week 19 - Prepping for School.....

I haven't given the new school year much thought, really.  Babygirl will be in 8th grade in the same school as last year.  I've faxed her medical letter to the school doctor.  Her headaches seem infrequent.  We just got a new phone to replace the one she lost in the spring ("It's in the truck, Mom!"  Well, maybe, but heck if any of us can find it LOL). 

School clothes shopping is scheduled for Saturday, and JuJuBee (and I imagine little Sunny) are coming along.  We have tour favorite stores - Plato's Closet, Old Navy, TJMaxx, Rue 21. I think Babygirl has a lot more energy available this year, so it will be a marathon.

Babygirl turns 14 on Sunday.  She wants lunch at a nice restaurant (The Loft for you who are local - very French atmosphere) and a dessert party at home.  We'll see how that plays out - Hubby works Sundays, so timing will be a challenge.

I can't believe she'll be 14.  The first birthday we celebrated with her, she was a tiny, underfed toddler who didn't understand English yet, let alone understand the cake, the two candles, and the concept of opening a gift.  Even then she was a sweet, loving, calm child whose huge brown eyes could melt a heart.  She's harder to say 'no' to than any of her sisters!

I'm praying for a better year.  We started last year with such hope!  She was feeling great, looked medically stable, and was so ready to get back into the swing of things.  She ended up attending less that half a year of classes. 

It has to be better this year.  Please.


Tuesday, August 27, 2013

Resetting Life.....

Two years ago I had a routine.  I'd been in that routine for about five years, long enough to fully establish the habit. 

Up at 5:30.  Breakfast. Walk dog.  Go to work out.  Shower.  Work. Home.  Rinse, repeat.

Then, chaos.  Hospitals.  Doctor visits.  Out-of-town.  Out-of-my-mind.  Aging parent.  Desperately ill child. 

I tried, really.  But I was exhausted, overwhelmed, and empty.  My physical activities got back-burnered.  My dog and I gained weight.  And that increased the fatigue and exhaustion.

Beach week was lovely.  But I was out of shape for it.  I didn't bike as much, couldn't spend as much time in the water, tired more easily.  Paris might have felt the same if Hubby hadn't needed to move slowly due to his recent surgery.  Much of the stair-climbing was done on sheer will and stubbornness. 

So, once again, I am trying.  Setting the clock for 5 AM and making myself get UP.  Walking the dog daily.  Riding my bike to work at least every other day.  And who knows, maybe I'll rejoin Curves when it gets to cold to bike.  I'm not promising - it's too stressful to promise, and who knows what will happen with Babygirl once school starts?

But I think maybe it's time to hit the 'reset' button on my life, and go back to being more than just "Babygirl's Mom". 


Sunday, August 25, 2013

A Lotta Nothing....

I spent most of Saturday catching up on housework.  Two weeks' worth of dust with one week's worth of unpacking sandy stuff, laundry and re-entry into our 'real lives.'  It's amazing how much stuff just finds a home on the coffee table and starts putting down roots. 

For those of you (not many, I know) who have hired someone to help with housework:  Do you find yourself cleaning so that THEY can clean?  LOL.  It's not cleaning, exactly - it's picking stuff up and putting it away so someone else can find the coffee table/floor/kitchen counters and actually clean the dirt that was accumulating under and around the junk.

And then there is the bill paying.  I sat down to enter all the little things we spent at the beach, balance the checkbook, and pay bills.  I discovered that I was WAY behind - it's been since before Paris that I sat down and took care of things.  I had a late fee or two to cover - ugh!

So between cleaning yesterday and paperwork today?  I feel like I accomplished nothing and still didn't actually have a day off.  But considering the pile of stuff I need to mail out I must have done SOMETHING! 

I'll make up for it next weekend.  Curlygirl, Squeaker, Babygirl and I are going to the amusement park together.  It should be a good time!


Friday, August 23, 2013

Third Year, Week 18 - Radio Music....

Babygirl and I were listening to the radio in the car the other day.  Elton John was belting out "I Guess That's Why They Call It the Blues" and I was belting along with him.  We got to the "Laughing like children, living like lovers - rolling like thunder under the covers!" line and Babygirl, startled, yelled, "MOM!" 

"What, Baby?"

"MOM!  They're singing about....!"

"Sex?  Um... yeah.  Most radio songs are about sex." 

"MOM!!!! They are NOT!"

"Okay.  Name a song." 

Thoughtful pause.  Several false starts, with an ever-increasing awareness that I have a point.  Finally:  "John Lennon's 'Imagine'!"

Thoughtful pause on MY end.  It's a good choice, and what 13 year old would think of THAT song?  But hey, I'm not going to lose THIS game.  So, once again, proving that I likely deserve at least First Runner Up in the Bad Mother of the Year competition:

"Imagine there are no rules so I can have sex with whoever I want and not feel guilty."



Next song up?  "Rock Me Mama." The only thing better would have been "Mama's Got A Squeeze Box."  Ahhh, success.


Thursday, August 22, 2013


I said that beach week was an unqualified success.  I still say that it's true, given how ill Babygirl has been for the past two years.  But it doesn't mean I don't notice the differences. 

Babygirl isolates herself more these days.  Often it's because she's used to being alone and needs that space.  More frequently, though, it's because she is sincerely tired. 

Beach week is physically active.  We bike everywhere, unless we're walking.  We spend time on the sand, in the surf, in pools.  We shop, walk the tide line, hunt for shells and the perfect t-shirt.  We stay up after all of this and play games.  We vacation to the max!

This year was no exception.  The addition of a couple of little people meant that someone had to be in the beach house for the nine PM bedtime and beyond, but we took turns.  Babygirl was frequently done in by nine as well.  She slept on her beach towel in the sand some days.  She spent less time in the water.  She read more and played less. 

And when we arrived home, she spent about four days recovering.  She all but hibernated, sleeping, reading, sleeping, cleaning her room, sleeping.  It's been a very, very quiet week. 

I agree with her, in a way.  I've spent the week more quietly than usual as well.  But it squeezes my heart, those moments when I really cannot avoid seeing the truth - she is not a healthy little girl. 


Sunday, August 18, 2013

Third Year, Week 17 - Mare's Tails and Parasails......

Beach week was an unqualified success.  We spent eight days in the sun and sand, playing in everything from baby waves to riptides.  For most of the week there we were nine:  Me, Hubby, Babygirl, Niece, Sister-in-law, Curlygirl, SqueaksDaddy, Doodlebug and Squeaker.  Doodlebug is SqueaksDaddy's older son, six years old and a very busy little boy!  He'd never seen the ocean and was very excited.  All. The. Time.  LOL.

No one got hurt.  Sunburn was minimal.  Temper tantrums rare and fairly easily controlled.  Fruit was plentiful, fresh and local.  Boardwalk fries, excellent as always.  No one got hit by seagull poop.  Everyone smelled delightfully of sunscreen and sea air.  Evenings on the cool screened porch, with games from Old Maid to FishBowl.

Each day had its joys and delights.  From the first day's lake-like sea and caramel corn to the last day's crashing surf, coffee and muffins, we crammed in as much fun and sand as is humanly possible. 

One especially lovely day there were high, thin clouds.  Mare's tails, they're called - wispy and ethereal.  What made them so notable was the sun.  Periodically throughout the day, delicate rainbows would come and go among these lovely clouds, hovering over us for hours on end, gently glowing.  We discovered that these rainbows were much easier to see with our sunglasses on (polarized lenses helped somehow?). 

On our drive out, we traveled between bay and ocean, and were treated to several miles of parasails.  They are lovely.  I'm never going to do it, but I am thankful for those who do, who make the air above the water full of kites and color. 

The only sad thing is that it is over.


Thursday, August 8, 2013


Last weeks' visit to CHOP got us some 'interesting' lab results.  Babygirl's hemoglobin had dropped from her usual 10.5 to 8.7 - a relatively huge drop in her body's ability to get oxygen from one place to another.  Her LDH (an enzyme found in liver, bone, blood and a couple other places) was high,  implying that something was destroying her red blood cells (as opposed to the idea that she was quietly bleeding to death into her GI tract or something).  This drop took place over six weeks, and if the process continued unabated we could expect that in another six weeks she'd hit 6.9, which is beyond critically low. That degree of anemia means (in an adult) that I'd have to admit you to the hospital for a transfusion since you'd be considered too unstable for outpatient transfusion.

It is a testament to how much I've adjusted to our crazy life that I didn't do the math on this until now, a day after we got her new lab reports.  Don't get me wrong - I wanted the results of the new labs, and if CHOP hadn't called I would have contacted Babygirl's local doc and asked him to track down the results.  I know that if I hadn't had them before we left for the beach that I would have worried some, and I'm so over having to think about anybody's health while on vacation.

So her hemoglobin on Sunday?  9.5.  It's not a healthy number by any normal standard (and the normal is 12.5 - 14) but I personally think it's rockin' awesome.  Her LDH, incidentally, has returned to normal, so whatever process (likely viral) that triggered this is probably winding down.  Do I care what it was?  No.  Not at all.

I've changed the way I think about this from a year or so ago, haven't I?  Rechecking the blood work and getting the results was an item on my mental "to-do" list, not a total gut-wrenching adrenal-squeezing obsession.  It is healthier for both me and Babygirl to stop obsessing.  Cutting our visits to every six weeks means I have to let go of the minute-by-minute updates we were used to.  The updates that made us completely, uselessly nuts. 

Timing is everything on these tests.  If we tested a week earlier, or later, we'd have missed the drama altogether.  Now that I've seen that in action a few (hundred) times, I can relax more about the blips and glitches, and trust that things will correct themselves.

Now that I'm thinking about it.....did they even check her kidney function this time?  LOLOL I don't know and I don't care.


Wednesday, August 7, 2013

Third Year, Week 16 - Packing Correctly.....

The key to packing correctly is to anticipate what you might need for any given journey.  Having the correct number of unmentionables, socks and sweaters is the bare minimum.  Having nothing AT ALL leftover at then end of your journey means you did not pack well enough!  Having a ton of useless stuff you didn't need means the same. 

On our Paris journey I packed just barely well enough.  I used almost every single thing I brought at least once, excepting only our umbrella and one spare pair of panties.  I could have used exactly one more pair of socks.  So it was close.  I even used my prayer shawl.  I'm not a napper, so when everybody else was napping in the cool AC I had something to keep me comfy.  Any true clothing emergency could have been a problem.  Citygirl solved an "I need something to disguise the fact that I've already worn this dress"  situation by belting one of my silky t-shirts over the top of a lace dress to go clubbing with our tour guide. 

Beach packing is a little easier.  We have a washer/dryer, so we don't really even need to bring a weeks' worth of anything.  At least it's true for the clothes.  Except for sheets and bathing suits, we come home with everything already washed.  Medications are already pre-sorted for Babygirl, Mom and me. 

But the food?  Trying to not shop for anything except fresh fruit and veggies is the goal.  Coffee, lemonade mix, hotdog buns, tortillas can all be brought along, but milk?  Sometimes you just have to break down and go to the store.

Usually we do pretty well.  There's always the spare box of elbows that comes back home with us.  One year we packed a lunch for the road home that included peanut butter and jelly on leftover burger and dog rolls.  My Dad laughed so hard I thought he'd break something! 

And this year (for the first time since Babygirl was 2!) we need to consider swim diapers and baby supplies.  Well, there's always Happy Harry's drugstore. 

Packing for Mom is a totally separate challenge.  Clothes in case my brother talks her into going out in public.  Nighties for when he doesn't. Pillow.  Oxygen machine.  Portable oxygen.  Walker.  Toiletries.  I spent most of my evening tonight getting this all set up, while she asked 16 times if I'd put in any socks. Or deodorant.  Or socks. Or get it.  

I'm totally stoked about leaving.  Can you tell?


Tuesday, August 6, 2013

Scary, Scary News....

A friend posted a link to this story:  It's about an outbreak of Cyclospora due to contaminated salad mix served in Red Lobster and Olive Garden restaurants in Nebraska.  They buy their salads pre-mixed from a manufacturer in Mexico.

Yeah, I know, Nebraska's a long way from here.  But it could just as easily have been here, and Hubby suggested Olive Garden for dinner the other night (we didn't go, but the local diner we did go to was clearly using a salad pre-mix also). 

For transplant patients like Babygirl (and their Moms!) this type of story is flat-out terrifying.  We were recently told that we could loosen up a little on our vigilance with making salads at home.  But it's clear that in US restaurants we must maintain our vigil. 

While we were in Paris, each salad that we ate was clearly made fresh.  There was never any evidence of dirt or wilt or the dryness you see when a shredded carrot has been sitting for a bit.  It may have been a mistake, but I felt very comfortable letting Babygirl eat salads there.  Here, not so much. 

The article above doesn't say that anyone got life-threateningly sick.  But for Babygirl and people like her, the risk is different:  Her immune system is being shut down on purpose to save her transplanted kidney.  She wouldn't be able to fight this off. 

And the outcome could be appalling.

As I prep for beach week, I've bought ingredients for things we always eat there.  One of the things I need is a chunk of salami.  Since cold cuts pose a Listeria risk, I have to get this chunk as safely as I can.  I ask the clerk to open a fresh salami sausage, disinfect surfaces, scissors and knives, get fresh gloves and so on.  I was suitably impressed by the guy who served us in Walmart this week.  He clearly didn't know WHY I needed him to do it, but he did everything I asked and even thought to disinfect the scale.  Beat the crap out of this chick: who didn't get it and clearly didn't care.

Add all of this to the many reasons why having our own garden makes so much sense.  Killing people with food?  How scary is that?


PS That reminds me - pack the food thermometer for the beach!

Sunday, August 4, 2013

Packing for the Next Journey.....

We are leaving for the beach on Friday!  We are ridiculously excited about this.  For financial reasons (dialysis at $75/day - yeah.), we were unable to go last year.  And the year before was not the relaxing experience that we usually enjoy (  So, in fact, it's been three years since I had a real vacation at the beach.

The beach is my favorite place.  Not just the one we go to  - any beach.  Waves, sun, sand, the smell of sunscreen and salt water, books, sandcastles, laughing children, bicycles.....all of it.  It's ALL my favorite.  I love our beach house (okay, it isn't OURS, exactly, but we rent the same one every year so it feels exactly like home!), four bedrooms (one of them a delightful under-the-eaves dormitory) and a screened porch - paradise.  We have the same menu each year, the same routines.  So although the members of the crowd traveling with us may vary from year to year (add or subtract a boyfriend, grandparent, uncle or cousin), the net effect is the same:  Rest, peace, recharge.

Ah, but the packing!  This is the first year we don't have one vehicle that will take all of us.  Traveling together from home to Philly is Hubby, me, Babygirl, Curlygirl, SqueaksDaddy, Squeaker and Mom.  Each of our vehicles (the Beauty and the Beast LOL) hold up to five, so we need both.  Mom can't get into the Beast, so she travels with me in Beauty as far as my brother's house in Philly, where she'll stay while we're away.  Everything she needs will fill my little car - suitcase, oxygen pump, walker, scale, etc.  Everybody else packs two bags - one for beach week, and one for the overnight at my sister-in-law's place.  We bring our food, so there's all of that. Towels.  Sheets.  And bikes.  Did I mention 5 bikes? Oh, and the wagon that tows Squeaker to the beach and back.  Yeah.

We are, and always have been, a small army.  When we were in Normandy, our guide pointed out the logistics of the invasion there - it's not just the men, it's the boots, packs, food, uniforms, weapons, tanks, ammo.....  I have frequently, in past years, described our approach to vacations (and Black Friday shopping) as 'storming the beaches of a foreign country.'  An apt description, indeed!  Arriving with everything you need so you don't waste precious beach time shopping for food and toilet paper - priceless. 

And speaking of toilet paper - thanks for the reminder.  I need to go pack some.


Saturday, August 3, 2013

The Hard Questions.....

Dinner last night was quiche, broccoli and (thanks to a good friend!) homemade blueberry cheesecake.  My mom's best friend was visiting, so it was a nice 'company' dinner.  Stories around the table ranged from food in Paris to our favorite Christmas memories.  It was lovely. 

I drove my mom's friend home, and we chatted about Babygirl and this week's lab results.  The fact that she needs extra blood work to follow up the blood work took mom's friend by surprise, even though for us it is more or less a matter of routine.

"Is she okay?  Is she having rejection issues?"


Well, she's okay, but not great.  The loss of the equivalent of two-plus pints of blood with no visible reason is troubling, and she's feeling tired.  And her doctors' method of searching for where it went does not in anyway match what I would do for a patient (I'd look for blood in the stool.  They're testing for Parvovirus.), so this is one of those many moments where being a doctor only makes things more mystifying LOL. 

She's been having rejection issues.  We know her body is fighting the new kidney, and there's nothing we can do about it besides follow instructions and pray.  Near as I can tell that doesn't really have much to do with the missing blood - it's just the underlying reality of our lives.

"She's not going to, you know, die, is she?"


Her question, however misguided, is actually a common one in our world.  People ask me this all the time.  The motivation for the question varies:  Prurient interest, ignorance, genuine concern.  And how I answer varies with the situation: "We are all dying, aren't we?"  "She's a sick little girl, and we worry enough about her without thinking about things like that!"  "She's got a long road ahead of her and we  can't predict how it will turn out."  Depends on how evil or irritable I feel.  It's actually quite entertaining to make someone realize that they are being an entirely inappropriate and hurtful ass.

Mom's friend was expressing concern, and like most people who ask, more interested in Babygirl than in my kicked-in-the-gut reaction.  So I told her the average life expectancy of a transplanted kidney (15 years), the number of times kids Babygirl's age require transplantation (3-4), the general risks of surgery and dialysis, and the fact that odds are that Babygirl will NOT die of old age. 

It's a depressing thought.  But the brighter thought is the answer to the flip question:  "What would have happened to her if you hadn't adopted her?" 

Because the answer to THAT question is simple.  "She'd be dead already." 

Somewhere between her diagnosis two years ago and now, she'd have died without dialysis and transplantation.  So whenever I face the hard questions about the future, I have to rejoice in the fact that she HAS one.  Whatever struggles we face, whatever challenges present themselves, whatever fears, doubts, questions and sorrows are ahead, they are AHEAD, and we have THIS day to live and enjoy.  Every single day with Babygirl in it is a gift worth any price. 


PS  If you have a friend with a sick loved one, don't ask that are-they-gonna-die question.  If your friend shares the he-only-has-two-months info, commiserate.  Otherwise, keep your curiosity to yourself.

Thursday, August 1, 2013

Third Year, Week 15 - The Impact of a Wish.......

You may have noticed that our week in Paris didn't get a 'survival number' like at least one post per week gets (including this one).  The numbers on the posts DO represent survival to me.  Each week that goes by is one more week since our lives were changed forever by the nephronophthisis diagnosis. 

But Paris was not at all about survival.  It was about rising above.  It was about triumph.

After our arrival home, I found Babygirl online researching the outcome of Make-A-Wish trips.  She had found an outcomes survey that showed all of the positive things that came from the trips:  Improved medical compliance, decreased depression and so on.  The vast majority of parents surveyed said that these trips marked "a significant turning point" in their childrens' medical progress.

I can see how this could be true.  The Babygirl who managed more than 1600 steps up and down the towers of Paris in one day is less likely to cower in the face of a mere headache!  I can already see more optimism, more energy, and more of a desire to go-out-and-do than I've seen in months.  She chatters more, is bolder to say what it is that she wants, speaks her own order to waitstaff in restaurants and holds her head higher in general. 

Conversation yesterday:  Babygirl (after I'd rudely interrupted her):  "May I speak now?"  Me (laughing)  "No."  Babygirl:  "Thank you.  Now as I was saying...." 

Courage.  She's always had it.  She's never been a quitter.  But there is a difference between a dogged determination to survive and an optimistic forward-looking attitude. 

Make-A-Wish makes a difference.