Week Seventy-one - Summer Vacation......

I worked Monday,and took the rest of the week off. By "off" I mean that Tuesday I spent all morning doing paperwork to expedite Babygirl's ongoing battle for proof of citizenship. I also spent a great deal of that morning arranging paperwork for submission/resubmission of medical expenses, seeking  better coverage from our insurance or reimbursement from our flex spending account. Tuesday afternoon I went to our congressman's office, as noted in my last blog.

Wednesday?  Hmmm..... Pack for our trip to Philly:  A bag for me for the three days we are staying.  A bag with enough towels for five adults and two babies.  Snacks.  Shopping with Curlygirl for lunch items: Rolls, lunch meat, water bottles, mustard, mayo.  Pick everybody up.  Bank.  Car repair.  Fill the Goose (thanks for the gas discount, Nancy - dropped the price $1.90/gallon!).  We were on the road by 2 PM and in our home-away-from-home by 5:30.  Squeaker travels well.  Boo, not so much.

Today we left for the hospital at 6:45.  This will usually get us through rush hour ahead of the majority of the traffic with a typical arrival at 7:30.  Today it was nearly 8:30.  Lord alone only knows what happened on the road ahead of us to back us up so far, but, ugh.

The appointment itself was uneventful.  I realized I had been forgetting to give her the bicarbonate, but with the improvement in her kidney function it proved to be a non-issue, and it was officially discontinued.  Her creatinine is 0.8 (still!!!), her cholesterol isn't bad (although her triglycerides are a bit high.....less 'white food' and more whole grain), and everything overall looked pretty darned good.  Her weight is slowly dropping, also a good thing.  Come back in ten days.  It is AWESOME to get two consecutive good reports!

Everybody wanted the opportunity to visit the King of Prussia Mall, since Babygirl had been telling them about it, so I drove them out, came back to spend a bit of time with my sister-in-law before she headed for work.  I  was hoping to snag a nap, but the call came for the mall pick up, so off I went!  I'm making the kids make dinner and do clean-up, and I'm going to BED.

Tomorrow is our annual family trip to Dorney Park, and for a change my niece and nephew are able to go with us.  I learned, quite by accident, that the Friday before Labor Day seems to leave amusement parks fairly uninhabited, so we always go on that day.  I don't even need to ask for the day off anymore LOL.

So, tomorrow IS my summer vacation.  I'm going to sit in the water park and stay cool with the grandbabies, after I rent a double stroller for them so the kids can go be lunatics on the rides.

Today is a GREAT day!

DeeDee

Back In Again......

Don't panic, it's not Babygirl!  Rhonda the Honda, who was doing so very well after her AC transplant, has hit some kind of electrical snafu. 

I was driving downtown, listening to NPR on my way home from our local congressman's office (he volunteered, after hearing from Make-A-Wish, to push some of Babygirl's paperwork through faster), when the front speakers faded away, and I was hearing the news from the backseat only.  And then, not at all.  The new AC faded as well, so I shut it off and tried to roll the windows down. They were VERY sluggish, and I heard an odd but not ominous clicking from somewhere under the right side of the dashboard.

Something electrical?  I turned off the headlights and drove cautiously to our regular mechanic, completely forgetting that he doesn't DO electrical problems.  I pulled, turned Rhonda off, and went in.  Take her to the guy who did the AC, they suggested, since he does electrical stuff also.  I went out, and couldn't start her back up.  They gave me a jump, but after half an hour I didn't have enough power to unlock the gearshift and get her in reverse.

Hubby came to rescue me, and we went to see AC guy.  He's going to pick up Rhonda later, and we'll see.  Something is sucking the power out of the battery and not allowing it to recharge.  Alternator?  Maybe, but the clicking from the area of the fuse box was interesting.....

Sigh.  Just a little less drama would make me happy.  Still, it didn't happen when I was on a highway somewhere.

DeeDee

Going to Church.....

There is a certain beauty in days when there is nothing to report.  Babygirl's ulcer is slowly responding to treatment, and there are no new ones so far.  She can eat more comfortably, and if we time the Oragel correctly, brushing her teeth is not a problem.

Yesterday was the kind of summer day that we all live for - deep blue sky, puffy white clouds, enough heat to make the pool enjoyable, and enough of a breeze to keep the heat from being oppressive.  Babygirl and I biked to church and back, and took a nice walk as well.

Biked to church, you say?  I admit it was not our first choice of transportation.  Church is about a mile and a half away, and we live in a fairly hilly town.  But at least twice a year we are trapped in our neighborhood by the excellent intentions of our neighbors.  We live a few blocks away from the city's largest park.  There are events there all summer long.  But the big bike/run event, and the breast cancer walk are enormous.  And the walks literally surround us.  There is absolutely not one single way out of our neighborhood for at least a couple of hours during these events.  Each is on Sunday morning and effect our ride to church.  For the bike race, we can't get out.  For the breast cancer walk, we can't get back IN.

Naturally I completely forgot about this event.  We got in the car, turned the corner, and sat.  It took a bit to make a K-turn because we weren't the only people in this pickle, and we went home and got the bikes.  It made us a few minutes late for church, but it was a lovely ride (in my opinion) or a terrible ordeal (Babygirl's perspective) depending on your point of view.  Since I was in capris and Babygirl was in a short skirt, I can understand why each of us had a rather different view.

Sunday was a good day LOL.

DeeDee

Ulcer Update......

Oragel is the bomb.  Babygirl slept all night, no problem.  This morning I looked again, and things weren't any worse, for which I heartily thank God.  I had a mental worst-case scenario in my head that involved calculating the anticipated area of the ulcer based on its rate of doubling during the day yesterday (one to two to four millimeters over 12 hours?  Sixteen to two-hundred fifty-six.....? That would involve the ENTIRE inside of her cheek.  Yup.  Gotta shut down that imagination.). 

The original ulcer looked about the same.  There are two newer, smaller ones. And a couple more of the dark spots that tell me more are on the way.

The on-call nephrologist returned my call within three minutes, which is pretty impressive in my opinion.  I filled her in, told her we'd been warned about this possibility, and she agreed to call some triamcinalone (steroid) paste into our pharmacy.  Oh, oops! Don't do that - ours is closed on weekends!  We subbed in the local CVS (she looked it up online and faxed it from her computer, which is too cool). 

CVS at CHOP has my cell phone number and sends me a text when any of Babygirl's scripts are ready to be picked up there.  I found out today that not only did our current prescription information pass from Philly to here, so did that little trick.  I got a text telling me the paste was available for pick up as I was on my way there.

I confess, I did not know that triamcinalone came in a paste.  I applied it to the ulcers and asked Babygirl what it tasted like.  "It has no taste."  Really?  I put a smidgen of it on my tongue to taste it.  "But it feel REALLY wierd!"  Um, too late to tell me THAT.  I cant GET that stuff OFF of my tongue!  I guess I don't have to worry about it not sticking to the ulcers. 

You don't supposed they mix the triamcinalone with FixoDent, do you?   Ewwwww.....

DeeDee

P.S.  If they knew this could happen, why not just hand me a prescription for the paste to keep on hand just in case? 

Mom?.......

"Mom, my cheek hurts."

Uh-oh.  Watch out for oral ulcers, they said. 

"Hop up here and let me look."  Way back opposite her molars is a dark spot.  It looks just like any blood blister, about a millimeter across. 

"I think you bit your cheek."  Since she does this with roughly the regularity with which she trips over cracks in the sidewalk, I was relieved.  I went to work and forgot all about it. 

When I arrived home she complained again.  A second look revealed a small ulcer, about 2 mm across, with a small red rim.  The doctors told us to call 'right away' if we saw ulcers, but it's 6 PM on a Friday night, which is, of course, exactly when all medical disasters strike.  That, or 2 AM Saturday, which was Citygirl's preferred "I have an earache and a fever" time. 

"We'll get some Oragel for you when we go shopping tonight."

We went out for dinner.  Babygirl didn't do so well eating.  A search of Walmart revealed that Oragel and similar  products are hiding with the denture adhesives.  Thankfully, not too far away from the melatonin, which I've decided to try for an ongoing bout of insomnia.

By the time we got home the ulcer was about 4 mm across, with a significant red rim.  Oragel was very helpful, and she's resting comfortably now.  I'm hoping that my "wait until morning and see" philosophy doesn't end too badly.  Odds are good that my melatonin will knock me into a decent sleep just in time for her to decide she can't tolerate the pain in her cheek anymore LOL.

Ugh.

DeeDee

Week Seventy - Simplify.....

Babygirl's switch from Prograf (tacrolimus) to Rapamune has simplified her life a bit.  She still has to take medications twice daily, but instead of eight tacrolimus capsules twice daily, Rapamune is five pills once a day, a net decrease of 11 pills/day.  Between that, and the decreasing doses of prednisone, the elimination of her nightly Zantac and a decrease in her Cellcept (mycophenylate) dose from three to two daily, her pill sorter seems almost empty!

Eleven pills in the morning, down from nineteen post-transplant. Five pills in the evening, down from sixteen.  And she's still drinking two teaspoons of the yellow-tempera-paint-like mepron daily.

I have to admit that life has gotten far from 'normal' if you are thinking, "Hey, my kid is ONLY taking sixteen pills a day!"  But I think what makes it seem easier is not the number but the frequency.  This time last year we were dealing with our first week of dialysis, our first post-op recovery, and weekly injections.  The pills then seemed overwhelming, and she was 'only' on ten pills a day then, but she had to remember to take some with every single meal and snack.  Four or more times per day versus two?  Gimme two, regardless of the pill count.

Studies show that compliance drops dramatically each time you raise the number of pill doses per day.  Almost no one is truly compliant with a four dose a day antibiotic, but most people can manage once daily just fine.  Early AIDS therapies required people to take medication every FOUR hours - six times daily!  That meant alarms, midnight wake ups, and so on, and very few people could manage. 

I am very glad that we never had to try for three daily doses of her medications post transplant.  I can't imagine that we could comply, even with a full understanding of the price of non-compliance!  I'm very, very glad that things are getting less rather than more complicated. 

Of all the many things I have to be grateful for, this was what was in my heart today.  After all, it was pill-sorting day.

DeeDee

Rapamune.....

The new drug is Rapamune.  Babygirl's been on it for just under a week.  One week ago today her creatinine was 1.4.  Today it is 0.8, the lowest it's been since a couple of days after the transplant.  I'm thinking that Jorge's kidney was not liking the tacrolimus (which, as we have known all along, can cause kidney damage). 

That is GREAT news.  Less great, her neutrophil count is continuing to drop.  Still 'safe', but dropping.  Ah, well, that problem can be fixed, right?

Still waiting to hear about some other things like her cholesterol.  So far she hasn't noticed any problems, and she feels well, so...

It's a good day.  Okay, it's a GREAT day.

DeeDee

The One Who Stays Behind.....

This is my week NOT to go to Philly.  I can't go two weeks in a row.  I'm needed at work.  But when the visits are every other week, I usually do both. 

Staying behind is okay, I guess.  I can putter around the house, watch the grandbabies a bit, get some much-needed work done.  I could even go out and get ice cream and pig out (I didn't).  But staying behind these days mean no one else is in the house at all.

So what WAS that noise at 1 AM????

DeeDee

The Grownup.....

I hate being The Grownup. Every family has at least one.  I mean, I understand that families generally have lots of people over the age of twenty-one who take responsibility for themselves.  But each family seems to have a limited number of people who are willing to supervise the whole shebang:  Plan vacations, oversee the budget, make the doctor's appointments, select the nursing home, write the obituary. 

While Hubby is an awesome life partner, much of the above falls to me.  The main reason is that most of the people I feel responsible for are related to me, not him.  He took care of his mom when she was dying (before I met him), was Boy Scout leader for his little brother because his dad was too old, and so on.  He generously gave of his time and support when my Aunt Mary lived (and died) with us. 

But my Mom is a different thing altogether.  She was an awesome mom when I was a kid. She was THE Grownup. She planned camping vacations. She allowed a bajillion sleepovers, made creative Halloween costumes (my brother's Cub Scout den once ended up as a swarm of bees!), and happily hosted as many as 30 teens for Bible studies and sing-alongs.    She took care of her mother and father in their home until they died.  As she's aged, however, she's changed.  She has become more anxious, less welcoming, more judgemental.  It's very difficult for those who have married her children to feel accepted. 

The dementia accentuates all of these problems.  I watched my Mom and my Uncle struggle to find creative ways to keep my Grandfather safe as he declined - turning off the gas line to his stove, setting door alarms so the upstairs tenant could hear if he tried to wander off, and so on.  I am trying to imagine how extremely long the years between my grandparents' deaths must have seemed.  Seven years.  My mom has the same type of dementia.  We are about two years into it.  Eternity.  And more to come.

I joke that I know that I am part of the Sandwich Generation because my minivan has both a car seat and a walker in it.  It makes people laugh, but.....

Today I took away my Mom's checkbook and debit card.

I can't let her keep them any more.  Her budget is extremely tight, and although she might be able to eat lunch out with a friend or order a pizza once or twice a month, she can't do those things as often as she does, especially since she forgets to record them in her checkbook and thinks she has plenty of money left.  This month she decided that her Social Security must have come in, so she added that to her balance.  It did come.  I already recorded it.  We already spent it and can't afford to spend it twice.  She's $260 overdrawn, or will be when the last of her automatic withdrawals occurs.  I can't afford to cover it for her, so next month is going to be very interesting.

I explained why it was necessary.  And she agreed, sort of.  As she was handing me her card she was asking me what she should do about buying cigarettes (apparently she forgot she quit and started again). Taking her card will help keep her from burning the house down.  I can't wait until she calls the police to report her stuff missing - I can kind of see that coming.

The car keys will be next.  Lord help me.

DeeDee

Week Sixty-nine - Thirteen Approaching....

Babygirl is turning 13 in a couple of weeks, and while it is true that she is a MUCH easier child than any of her sisters were at this age, there is some emergence of adolescent behavior.  Learning more adult-style sarcasm is great, but the line between that and disrespect is a very, very fine one!

Monday, while we were being admitted, another recent transplant recipient was going through the same process.  A sudden spike in his creatinine had him in the same situation as Babygirl - admit, hydrate, probably biopsy.  His transplant was in July.  I'm guessing he was about 15.  He asked us whether biopsies hurt, and Babygirl was happy to tell him no.  His mom asked me about the process, and I told her about our recent experience:  "Overnight" became four days when they opted to treat the results of the biopsy.  Her boy's response was a hostile:  "I'm not staying here more than one day!"

Babygirl has not yet noticed that she can refuse.  Aside from the hydration issues (which IS in my opinion a matter of control for her), she has not balked even once about medications or procedures.  She hasn't tossed around any attitude about her illness or the changes in her life.  She's grateful when things are going well and relatively indifferent when things aren't.  She's actually complained more about my inability to ride more than six rides in a row at the park than about any single other issue (please don't turn me upside down more than that - bad things will happen).

But I've been mom to enough adolescent girls to know that fourteen is The Ugly Age of Girlhood.  And the ramp-up at thirteen is usually not a joyful event either.  It's well established that the commonest patient ages for rejection are 14-15, and 20.  Babygirl is enrolled in a couple of studies to assess whether or not medication compliance is to blame, or if there are other factors involved.  I've heard stories of adolescents who PRETEND to take their meds to appear compliant to their parents, but to retain some sense of control for themselves.

I've been trying to think of good ways to let her take control of things without losing control myself.  It's irresponsible to trust a delightfully scatterbrained twelve-year-old to be completely in charge of her medical choices, but there are areas where I could loosen up a bit. 

I think it's time to let her sort her own pills.  I think that the next time they discuss admission, she needs to be central to the discussion instead of just a room decoration.  It's past time to figure out if there is a way to keep her hydrated that is more acceptable to her than just water.

I'd welcome any suggestions or thoughts!

DeeDee

Happy to be Tossed.....

Babygirl's creatinine is  1.1 this morning.  After admonishing her to DRINK MORE, they decided that biopsy is not needed, at least today. They are stopping her tacrolimus, and starting a new medicine (I'm a touch sleep deprived so even though we just discussed it, heck if I remember what it's called).  I'll be picking it up here at the in-hospital CVS in case our pharmacy has to order it.  She'll get a double dose today before we leave, and I have to re-sort all the pill sorters, again.

We have to be back next week, so Hubby will have to make that journey.  One of the side effects of the new medication is that it can screw up cholesterol levels, so they'll be checking that as well.

Every time I think I've figured out what cockamamie language the doctors here speak, I am wrong. But I'm glad to be wrong this time.

Dorney Park here we come!

DeeDee

Back to the Biopsy.....

We came to Philadelphia yesterday.  We were going to stop at Dorney Park on the way here, but by my estimate ALL of New Jersey was already there, so we passed on that one, figuring there'd be fewer people on the way home today.  We ended up visiting a farmer's market, walking a couple of miles and having gelatto.

This morning's appointment was a bit chaotic. There were a lot more kids in clinic than usual, and there was a lineup at the lab.  But when the results came in, they weren't too good.  Babygirl's creatinine is up to 1.4.  There was some discussion, but the general gist of it was that we could opt for admission for hydration today with a biopsy tomorrow if (when) the numbers don't improve, or come back later in the week if (when) the numbers don't improve.

They had a lovely graph (man, I had to think about that word, since 'graft' is the more likely choice here at CHOP LOL) of all her creatinine levels since her diagnosis. It was entertaining, in a way - a VERY high plateau with a huge cliff drop at transplant.  But the less entertaining part is the slow, steady (thankfully not too steep) rise since then. 

So we are here.  She is scheduled for a biopsy tomorrow, barring some miraculous improvement in her kidney function.  And by 'miraculous' I think we'd have to drop to 0.9 or less - numbers we haven't seen since before the rejection episode at the end of May.

The biopsy is of the new kidney, and is to determine whether she is rejecting again or if the kidney hates the anti-rejection meds.  Either way, we're going to be here at least through Wednesday.

On the humorous side?  Babygirl is complaining that the IV is making her need to pee.  Um, duh?  We have to keep reminding her that if she isn't peeing as often OFF the IV as ON it, she isn't drinking enough!

DeeDee

Six Months Ago.....

We passed the six-month mark with the new kidney more than a week ago.  I mean it when I say 'we'.  Babygirl bears the scars on her body, but Hubby and I carry our own scars. 

Each time a major life trauma strikes you, it narrows your safety zone.  Each of us has said, "That will NEVER happen to me because...." and listed in our private hearts all the reasons why the afflicted are actually to blame for their afflictions.  The homeless could get work.  The mentally ill could take their meds.  MY kids ALWAYS wear their seat belts and would NEVER get into a car with an impaired driver.  MY daughters took their prenatal vitamins, breastfed their babies, and are stay-at-home moms, so nothing bad will ever, EVER happen to my grandkids.

Each of us is guilty, in the secret recesses of our minds, of the kind of Magical thinking that makes us sure that we will not suffer.  And each of us knows, even deeper, that we are lying to ourselves.  As we get older and repetitive trauma strips away our super powers, we understand more, and judge less.  And we adjust our expectations accordingly.  I AM going to have arthritis.  I'm going to take these blood pressure pills for the rest of my life.  Getting up off the floor is never going to be simple or graceful again.

Having your child diagnosed with a life-threatening illness digs much, much deeper.  There's no protection here.  All our imaginary armour fails, and there is no one to blame, no excuse that makes that child's suffering palatable to us.  I see children at CHOP who are undergoing chemotherapy, who are missing limbs from birth, who are hooked to feeding systems, IV poles, pacemakers and dialysis machines, and no one is responsible for their pain.  It just IS. Knowing that the treatments are all, in the end, delaying tactics (with more or less success depending of factors wholly outside of our control) adds uncertainty to unending uncertainty.

I have been deliberately avoiding keeping track of the milestone days surrounding the transplant.  If I did, those milestones could easily overshadow other very important things - Squeaker's birthday, Babygirl's official adoption by Hubby, sunny spring mornings, summer sunsets, mission work.  Keeping track feels a little like some kind of scorekeeping, letting me fall back into the realm of Magic (after all if the kidney makes it through this first year we are good to go, right?). But six months seems momentous.  It hardly seems possible that a little more than six months ago we were still dealing with dialysis, nightly pain, daily exhaustion. 

When I think about now, compared to then, daily life is SO much better.  Babygirl sleeps (when she isn't having all-night-up sleepovers with friends!).  Babygirl is energetic, happy, gregarious and carefree.  She's looking forward to restarting school, getting new clothes, and a new season of Glee.

My imagination is somewhat poorer for all of the experiences of the last 16 months.  I try not to let my mind run riot through the valley of the shadow, I do.  But I'm having trouble rebuilding my Magically safe world. 

No great loss. It never existed in reality. 

It's been a long road to recovery.  It's been a winding, twisted journey to Reality.  Nothing has changed but the view.  Learning to appreciate real life instead of the fantasy has benefits as well as risks.  I really don't want to live fake.  But that means I need to look, really LOOK, at life.  It's scary. It's beautiful.  It's amazing. 

Like Babygirl herself.

DeeDee

Learning Lessons......

It's amazing to me that I have no children who are too young to go off on their own, unsupervised.  I took Curlygirl, Boo'sMommy, Babygirl and the babies to the mall and came home.  Since I utterly HATE mall shopping, this is a miracle for me! 

I gave Babygirl some money and some instructions about looking for school clothes.  Curlygirl will help keep her on track if needed, but I'm thinking she'll learn a great deal on her own today.  I remember when CityGirl was learning to budget money for school clothes, and how frightened she was by how fast $100 disappeared from her clothing budget!  It only takes one "cool outfit" that "I have to have" to make you realize that you'll only have two of those outfits if you don't plan well!

I'm a little excited.  I can't wait to see what kind of choices she makes! 

DeeDee

Week Sixty-eight - Food From the Garden....

We've been eating food from the garden for a while now.  Lettuce, radishes and herbs come early, and the lettuce just keeps coming.  Zucchini and cucumbers were plentiful until the hailstorms, and we aren't sure they're coming back.  The beans were a bust this year, but yesterday we got the first tomatoes.  I took bruschetta to a church dinner, made with queso fresco, basil, tomatoes and fresh bread.  The eggplants survived the hail somehow and are blooming, so we hope to see some fruit there.

But it's always most exciting when we get to harvest something we haven't tried to grow before.

Today, we picked corn.  We got 9 ears, the largest of which was about four inches long, and none of which had corn all the way around.  One stalk still has some tiny ears trying to come out, so we'll wait and see if they get bigger, although I'm not to hopeful.

So we grilled a steak, cooked some leftover potatoes with onions and butter, and cooked our corn.  There was a sort of mental drum roll, and.......

Sigh.  The vast majority of the time the food we get from our garden is FAR better than anything we buy in a grocery store.  Lettuce is crispy and we have more variety, beans are eaten before we can even cook them, pea pods consumed before the peas are even ripe.  But corn?  Not so much.  The local corn has been SO delicious this year that ours was a disappointment by comparison, anemic and starchy.  The best I can say is that it was better than LAST years' terrible crop of local corn.

It was fun to watch it grow, and I'll keep the stalks to decorate with for fall, but I think this'll be the only year we try corn. 

For Babygirl, the beauty of a garden is that it expands what she is allowed to eat.  It's much safer to make a salad from our own garden, where the lettuce is unlikely to be contaminated with E. coli and salmonella, that to try to 'degermify' what we buy in the grocery store.  I'm much more comfortable letting her sample something that we grew ourselves raw - she can't, musn't have uncooked green beans from the grocery store.  Who knows how many unwashed hands have been in that bin? When they coat fruits and vegetables with oils and waxes to make them look nicer, they are sealing God alone only knows what germs underneath, and it's hard to wash that stuff off.

We didn't start growing our own food for this reason.  But I'm glad we were already in the habit of doing so.

DeeDee

Reality is.....

Babygirl's creatinine is 1.2.  They aren't changing anything.  It amazes me that the FIRST time her numbers got anywhere near this high they hustled her into the hospital and did a biopsy.  Although they have been murmuring about the possibility of repeating that experience, it's been more than three weeks of crappy tests and they seem.....undecided.

Hubby just said, "I don't think the tests have any meaning anymore!" 

Reality is just a word, right?

And according to Babygirl, it's a GREAT day.  So it must be.

DeeDee

Working a Full Week......

I am scheduled to see patients every day this week.  I'm pretty proud about it - it's only happened two or three times in the past year or so.  But I'm deluding myself if I call this a "full" week.  As always, there is something or other that makes it challenging to get in those forty hours.

I started this morning by realizing as I awoke that Babygirl was supposed to get blood work this morning, before her dose of pills.  Thankfully we were told we could do it locally even though it will take a few days for the tacrolimus level to show up.  Not a problem, except that Babygirl was on a sleepover and took her meds with her!  I had to call, wake people up, and go take her to the lab and then return her, all before starting my day. 

I left work an hour early to grab my mom and take her to see her doctor.  I started calling her at 12:30 and finally woke her up at 3 PM.  I told her to take her pills and get ready to go to the doctor.  She didn't remember she had an appointment even though I told her twice last week.  On the way there she scolded me for taking her.  She could go herself, she still drives, remembers where the office is, yada yada yada.  I pointed out, as kindly as I could, that she would have slept through her appointment if I hadn't awakened her, and wouldn't have remembered to go.  She missed an appointment last week despite instructions on time and place, but I decided not to mention that one.

(As an aside, I have to say that I'm a bit annoyed by the fact that her doctor talks to me rather than her, as if she weren't even in the room.  She's not that demented yet, doc - talk to HER. I'll help out when you need me to!)

I got home, made dinner, played a game with Hubby (check out Dominion - it's a great game).

Tomorrow I'm supposed to start with a house call.  I forgot to grab the chart, so I'll have to run to the office, pick it up, and then figure out where the heck this place IS.  The first house call is always the toughest, but I really like this family so it should be okay.

Tomorrow afternoon I leave work early to have a root canal rechecked.  It's fine, but they want to get an x-ray a year after I had it done.  It's closer to two years, but hey, I've been occupied!

Next Monday is another Philly day, so no full work week there either. 

Thank God we couldn't afford to go to the beach.  I don't think I'd have enough paid time off to go!

DeeDee

Extreme Housekeeping.....

Going on the mission trip was wonderful.  And spending a day with Babygirl at an amusement park on the way down to Philly was awesome.  Spending four hours in one of the biggest malls in America the next day was impressive. 

But what is far from wonderful, impressive and awesome?  The overall condition of my house. 

Three weekends away means three weekends of not cleaning much.  Four weeks.  Even in my more slovenly days I would likely have managed to pick up a broom at least once during that time!  So today was catch-up day. 

I was up at 6:30 and started, as usual, with a laundry sorting party in the basement (Big Family joke:  If I sort laundry and have 6 loads, and I wash 9 of them, how many do I have left?").  Then I had a pill sorting party in the pantry.  Coffee and toast on the back porch after opening all the windows to drop the 80 wake-up temperature to a low of 78 (it's 88 now). 

I have a tendency to run out of steam and let myself get distracted, so I motivated by setting the stove timer for an hour - no stopping 'til it beeps!  I did this a total of seven times today, starting each new hour with a load of laundry, and finishing each with a 20 minute break for water, lunch, and/or time in the pool to cool off.  Hubby had his own stuff going on, so we met in the pool every hour LOL. I don't believe I've ever cleaned in my bathing suit before.

The house is MUCH better.  I still have the upstairs bath to clean, but I can catch that tomorrow morning. 

I have a question, though:  If we only have one dog, how did I manage to sweep up four of them?  I swear I have an entire trash bag FULL of dog hair.  I wonder if I could make yarn......?

DeeDee

Week Sixty-seven - A Good Day......

People ask me multiple times daily how Babygirl is doing.  I'm always, always impressed by how caring people are.  But I've been so tightly wrapped up in the details of her life and labs that I know I've been over-answering this question for some time.  Like the hypochondriac who responds to a simple "How are you doing?" with an entire organ recital, I think I've been giving people more than they need to hear.

So lately, it's been more like this:  "How's Babygirl doing?"  "Today is a good day - she feels great."

It's the truth.  I follow the numbers like rich people follow the stock market, responding to each high and low as if my entire fortune depends on it.  But she doesn't.  She plays, reads, watches Monk and Glee, rides her bike, swims...and somehow manages to be perfectly happy without agonizing over the numbers.  From her perspective, since the dialysis is over and she has a new kidney, she feels GREAT.  Every single day, regardless of whether her creatinine is 0.8 or, like yesterday, 1.2.

Taking this tack is actually far less stressful.

Today is a good day.

DeeDee