He DOES Have a Pulse.....

When my baby brother first met Larry, he asked, "Does that dog even HAVE a pulse??"

Yeah, he's pretty laid back.  And the first couple of weeks, he moved like an old man, stiff of hip and slow of step.  He just generally didn't have a f..., well, any energy, to give.

He was stressed.  He was mourning.  He'd lost everything, twice over:  His name, his surroundings, and most of all, his person.

I'm pretty sure it was just one person, and I think it was probably an old guy.  Larry perks up every time a slow-moving old guy with a cane and a baseball cap comes by, and moves a bit faster to check him out if possible.  With Maybelle we were able to keep her name.  With Larry, we only knew that the rescue had been calling him HotDog for a couple of weeks, and they didn't know his original name.

Camping this weekend loosened him up.  He knows how to work a zipper (but you have to watch - he likes to take the slider off - we have a couple of sweatshirts that don't zip anymore) so he could get into the tent anytime.  And even though he could have left the tent without assistance, he woke me up for permission when he needed to go out in the night.

The fenced dog park let him do what he likes:  Monitor the perimeter.  And once that was done, he RAN.  It was amazing to see a dog that only a few days earlier required dragging to move, run.

This mornings' walk got even more interesting.  Larry got a squirrel by the tail.  Yes, Dave, yes, he did. There were a few factors in this.

1) City squirrels are oblivious little gits.  They apparently assume they are pretty safe.
2) Larry has some pretty impressive sneak skills for a big dog.  He drops low, the tags stop jingling, and he moves in careful.
3) When he shifts from stalk to strike he SHIFTS FAST.
4) Squirrels, when in a panic, underestimate the size of their squirrely butts in relation to the openings of chain link fences.  It was a nearly fatal slowdown.

In the end, the squirrel's tail was missing a good bit of fur, and Larry was wearing his finest Stoner Smirk.

He's becoming quite the family man. If you don't go to him, he'll come to you.  Yes, the boy has a pulse.

DeeDee

The Smell of Childhood....

From the time Citygirl was three I've been taking her camping.  The first time was laughable.  I learned quite a few things on that overnight in the woods:

1) I had been camping all of my life but I had never been 'The Grownup' on the trip before.
2) 'The Grownup' has to pack more than a tent and sleeping bags.
3) Waking up in a camp with no coffee is horrid.
4) Other campers, although total strangers, are sympathetic to this fact and will give you coffee (AND Tylenol) if you look pathetic enough.
5) You need to find other people who are better at adulting than you are to go camping with.

Fortunately for us, we soon after met our neighbors across the street. Their three young boys and their orange tent ("The Rainmaker") were veteran campers, willing to let us tag along while I figured out 'The Growup' thing.  THEIR friends had two boys, and a girl nearly Citygirl's age, and a huge canvas tent they lovingly referred to as the Taj Majal.  (The first time I met them, they were assembling this tent in the dark.  Their then-11-year-old boy was assisting as dad instructed:  "Move the pole left.  Left!  NO, MY left!  You'll NEVER be a f***ing engineer!"  I debated the wisdom of staying.  I'm glad I did - that line is etched in camping lore and laughter forevermore.)  We all camped together at least once a year for a long, long time, returning each Memorial Day Weekend to a local campground, adding family and friends as time went on.

Then.

Kidney failure. Transplant.  Constant concern about germ exposure.  Our campground flooded and the team worried that leftover contamination from the flooding would make it an unsafe place for Babygirl for a year or so.  Citygirl's graduation weekend took us out of town one year, and....I don't really know what all else happened.

So this year, for the first Memorial Weekend since 2010, we went camping at 'our' campground.'  Many of our campground friends have grown up or moved away.  But some still come, and for Babygirl this is campground "home."

"Remember that time we had that race where people had to put their heads down on a bat and spin around and then ran?  And people ran right into parked trucks?"  "Remember those people over in the corner who always had that HUGE fire?"  "Are we going to build the big slip-and-slide on the hill?"  For a child who often cannot remember being anything but sick, such memories are sharply sweet.

Home. Return to a simpler, worry-free time.  S'mores around a campfire, teaching a new generation Grampa's song about the bear, and spending time on the thyme-scented hill where Citygirl and I used to lie with Bobbe and Tory, watching the stars until we felt sure it was the earth moving under us, and not the stars moving over us.

DeeDee

Wait....Where's Maybelle....?

Getting a new dog right before you lose your beloved old dog was regarded by many who know us to have been a somewhat insane idea.  We kmew, of course, that Maybell was dying.  We had no idea, obviously, that it would happen only a week after we arrived home with Larry.  But the advantages of that choice have been very clear in the past five days.

Starting with Simon:  The old man did not do well when his brother died.  He spent weeks looking for him, and clearly mourned his loss.  I can't say that Simon and Maybelle were as close as Simon and Garfunkel were (they were littermates, after all), but having another dog here has made the loss of Maybelle less traumatic for him.

Then there's us:  Larry is acclimating, and increasingly showing us his goofy side.  He's begun to play, and if he still isn't the world's best walker, he at least appreciates the opportunity to get out of the house.  The fact that he so clearly likes us, and is so happy to be here helps ease the pain of the loss.  And when I needed to cry the other day, he sympathetically let me sob all over him and didn't protest.  He's like Maybelle in that way.  Maybe it's a hound thing.

Finally, there's the neighborhood:  Everybody who sees Larry is excited.  "What a sweet/beautiful/awesome dog!"  "Yeah, he's pretty laid back.  We suspect he was a serious stoner in a previous life."  "Hahahahaha! Yeah, I can see that! Probably went to Woodstock. Hey, wait....Where's Maybelle.....?"  It makes telling people about her loss less painful when there is a gigantic goofy distraction at the end of the leasth.

Once again, I have to say:  If you are looking for a dog, consider an adult rescue.  Larry came from a high-kill shelter, and we are lucky to have him.

Larry, snuggling with Hubby's ALF toy.

In the SMALL dog bed, naturally.

DeeDee

Linking Sense to Sound and Sight....

Synesthesia: (noun)
1. a sensation produced in one modality when a stimulus is applied to another modality, as when the hearing of a certain sound induces the visualization of a certain color.
2. or, the feeling that you are losing your mind.

I suffer from synesthesia.  I can sometimes hear smells. I smell smoke when there is nothing there.  Blinking lights go 'tick-tock' in the front of my head.  Sounds can split into dozens of separate pieces that refuse to rejoin.  Soda bubbles dance on the roof of my mouth when there is nothing in it.  I can see green when everybody else is seeing orange.

Thankfully this weirdness is not a full-time occupation.  Migraine auras generally last only about 20 minutes, although I was stuck in smoke-land for about 48 continuous hours last week, which is incredibly distracting. 

Perception is an amazing thing.  I remember doing a study on taste and inheritance in college.  We were given paper strips impregnated with a chemical that only certain people can taste.  The ability to taste (or lack thereof) was inherited, and we were to test our families and see what sort of patterns emerged.  The 'taste' gene was apparently recessive, and no one in my family could taste this stuff, but I swear to you that it was FOUL.  Turns out that there are dozens of such things.  I tested a couple dozen, and among my classmates I was the only one unfortunate enough to be able to taste them ALL.  I remember that one was BHA, a common food preservative.  No one else could taste it.  (Perhaps I passed all this on to Citygirl, and that is why she can tell what country any given wine is from without seeing the label?)  The entire experiment made me understand why some people can eat liver (shudder) and other people think all meat smells like dog poo.

I wonder.  I've wondered since I was a small child if things would look the same if I could look out through someone else's eyeballs. There is no way to know for sure if the blue I see is the same as the blue you see, at all.  

What if autism is just a more-or-less permanent state of synesthesia?  What if one day pine trees smell like pine and the next they smell like a loud train coming straight at you and you can't predict which it's going to be?   I have a glimmer of how horrifying that might be to try to sort through.

What an incredible blessing it is when sound and sight are linked correctly to sense.

Be grateful if that's true for you.

DeeDee

1,000 Miles....

We've had Maybelle just over a year.  Not counting the few days I've been in Philadelphia, and a couple of days before Citygirl's wedding, I've walked her every day.  More often than not, we walk twice a day.  Our typical walk on a weekday morning is about two miles, and weekends can be four or more. Evenings are another one to two miles.

Taken altogether, we've walked over a thousand miles.

Rain, snow, bitter cold, sunshine: We've done it all.  We're on a first-name basis with all the neighborhood dogs:  Jeter and Coach, Ruby, Gracie, Sadie and Maya, Sugar, Chester, Penelope, Lucy, Jackson and Oppie and Cooper.  Poodles and Pitties, Rottweilers, Goldens and doodles and little white fluffballs and stiff little terriers, all buddies or enemies depending on whether Simon is tagging along or not.

We are down to our last miles, now.  Last night the inevitalbe happened:  Maybelle couldn't drink.  She keeps trying, and trying, and trying.  And I keep replacing bowl after bowl after bowl of blood-tinged water where the level never really goes down.  Tonight's walk was brief.  She got tired halfway up the hill and had to stop and rest, although you could see she really couldn't figure out WHY.  She led me the rest of the way around the block, stopping to try to climb onto any porch with people on it to say 'hey' one last time.

We will walk one more time before breakfast tomorrow, like always, down to the river so she can sniff the 'coon and beaver tracks. And at 11:30 we'll go see Dr Kathy one last time.

DeeDee

Being Mothered.....

As I was walking this morning, I was thinking about my Mom.  It's funny to say that I don't miss her, and it isn't QUITE true, exactly.  I finally concluded that I don't miss who she was in the last four years.

So I tried to think back:  When was the last time she was truly my mother?  When, in the sense that SHE mothered ME, and not the other way around?

The memory came to me hard. It was the summer of 2011.  We were on vacation, and Mom was with us, actually adding to our stress because her mobility and mental state had begun to decline - but she insisted on being in the center of everything.  That horrible summer when Babygirl had just been diagnosed with kidney failure and we were out of time and options. (The Beach.....).  That relentlessly horrible vacation with the daily phone calls that just kept adding and adding and adding to the stress until I finally couldn't take it anymore.

Mom was there for me while I cried, and I REALLY cried.  I cried forever, out in public, on the boardwalk for the love of ALL that's holy.  I must have looked like the worst kind of wreck, and she never once suggested that I was over-reacting or needed to 'just calm down.'  She just stayed with me and held on until the storm passed.  I can still feel it - her unconditional love and support.

It wasn't long after that that she became incapable of those things.  Not that she didn't love us - she always did - but she couldn't remember that we had any kind of problems going on that might be bigger than whatever was drifting through her mind at the moment.  If I could go back to anything, I'd want to go back to when she was fully present, for that was one of her great gifts, and something she was always far better at than me:  To live fully in the moment.

 This.  I miss this.

A few years later, a stranger....

And in the end, this....

DeeDee

Adjustments....

My brother and sister-in-law came over to meet Larry yesterday.  He was sleeping in the back hall, a spot he chose to avoid the chaos of three small, loud, running toddlers (who, by the way, neither bothered nor impressed him).  My brother looked him over, admired him, and then asked, "Does this dog even HAVE a pulse?"

Larry's pretty laid back.

The first few days with a new pet are always an interesting learning curve.

Larry does not understand stairs.  Like, seriously, not even a little.  On our way home we had to hoik his 80 pound self up and into the the truck each and every time we stopped, and when we finally got home, he looked at us and pretty much said, "No, thanks, I'm good, I'll just sleep here" rather than try to get out one more time.  Every morning when we let him outside he trips over his leash, skids off the end of the deck and flies out into the yard.  It's the fastest we see him move.

Larry is afraid of moving cars.  Since we live in a city and walk on city streets, this is a little challenging.  The first morning he froze or dove into the bushes every time a car went by, and Holy Hannah help us when it was a garbage truck (and remember, now, I have three dogs with me!).  He has decided, after just three days, however, that these vehicles are apparently not intent on killing him, so he now just stops to look and make sure.

Larry is afraid of beach towels.  We got rained on yesterday, and were totally drenched.  I dried off Simon, then Maybelle, and then went for Larry.  That is when I learned that Larry can, indeed, run.  Somewhere in his past someone must have tossed something over his head to restrain him somehow, so if I want to wipe him down I have to start on one side at the back and work forward with a small towel and don't, for heaven's sake, let the thing flap.

Maybelle, who is never snarky, has been snarking at Larry (a growl, a bark, no teeth).  He can't figure out how to get on a couch anyway but he was afraid to be in the same room with her for a bit.  They are working it out.

This is everybody this morning (Maybelle is against my leg, and Larry is in Simon's little bed LOL):

All chillin' with mom. Time for a walk.

DeeDee

Keeping Promises......

One of the issues that we've had with neurology has been difficulty with follow up and follow through.  It took from September to November to get an initial appointment set up, and there are usually weeks to months between appointments.  A new medication will appear to be helping, and then stop, and we call to update them and then...wait.  And wait.  And then some small adjustment is made, and we are told to keep our already-scheduled (or not-yet-scheduled!) appointment.

When we leave an appointment, we cannot EVER schedule the next one.  We have to call the scheduler, and more than half of the time the schedule 'isn't open' for appointments yet in three months, or six weeks, or whatever.  They can't match appointments up with the transplant team because those days are seizure days, not headache days.  And so on and so on.  Add to that the fact that I just feel like they aren't really paying attention?  It's been tough.

The problem is that I know from experience that there are no local pediatric neurologists.  The nearest to us is more than an hour away an he isn't taking new patients.  The clinic at University Hospital is full.  Rochester has a headache clinic for adults.  So we hung on.

So starting over with someone new was a little scary (Fresh Start).  We left Tuesday's appointment without a follow up appointment and the promise that the provider who saw us would be setting up appointments with a headache specialist, a pain management specialist and the pain management program.

I put a reminder in my phone to call in two weeks to check on the status of the appointments.  It's what I do. I figure if they haven't called in two weeks, something 'got forgot' as it were.  It's what I tell my patients to do.

While we were meeting Larry on Thursday, my phone kept pinging with new email messages.  I ignored them - after all, odds were good it was a sale at Wayfair.com or something from Freecycle.

When I checked, though, there were three emails confirming appointments with providers I'd never heard of at the new medical system, all on the same day and location, all back-to-back in the afternoon of June 2nd.  I haven't had the chance to check, but I'm guessing that it's neurology, pain management and pain management team - all set up within 48 hours of when we left our appointment, and all for less than a month from our original appointment.

These appointments are at Nemours DuPont Pediatrics in Wilmington, Delaware.  It's 200.3 miles according to Mapquest, as opposed to 184.1 for CHOP.  We have no need to see nephrology at that time, so we don't need to go the CHOP, but so far they haven't sent any records (gee. what a stunning surprise.) so I might call and see if I can at least get her MRI's on disc to take to the appointment.

It's actually scary to feel.....hope.

DeeDee

And My Other Brother Darryl....

As you all know, we are losing Maybelle (Another Loss Coming....).  She is doing remarkably well, considering.  We've discovered that elevating her food and water bowls to just above chest height allows her to swallow, so we've halted the weight loss.  We don't let her eat any crunchy food, so the bleeding has decreased.  But in medicine we have a saying:  "All bleeding stops eventually."  If the cancer itself doesn't make it impossible for her to breathe or swallow, she'll get too weak from the blood loss to function.  Either way, we lose.  But for now, she appears energetic (if somewhat slower than a few months ago) and happy, so we are riding it out.

But.

One of the things I love best about my hubby is that he loves 100%.  (I'm not a fan of saying "110%" or some higher number - it's horse pucky. 100% is the total, the max, all in, no holds barred full on cannonball love).  So when Maybelle dies, it's going to be 100% grief.  (This, by the way, is true for both of us, but by nature and by training I have a certain ability to be able to both feel it and, I don't know, observe it?)

Part of my reason for getting Maybelle in the first place is because Simon is an old little man.  I expected her to outlast him, and having a 'back up' dog in place in advance of his sad demise seemed prudent, since I was reasonably certain that Hubby, like his Dad before him, would not want to look for a new dog after the death of his beloved old man.

I mean, who could?  Look at this thing:

But Maybelle hit me hard in the heart.  I haven't loved a dog like this, maybe, never.  Maybe even including Lady, my dachshund from my childhood.  And why not?  This face:

So, applying my own logic too my own sad heart, I've been, once again, cheating on my dogs and looking at doggie porn online.  There are SO many homeless dogs!  I decided that I wanted a hound. Something about Maybelle just twists me, so I thought maybe having a similar face would help.  I applied at a couple of local hound rescue places for a couple of sweet looking dogs (neither TOO similar to Maybelle in looks, but adorable nonetheless).  After weeks of no replies at all, I spotted a Redbone Coonhound that looked so much like her that I clicked on her image and sent an email for Maggie.  I got a response within hours, asking for me to fill out their application, which I did.  They accepted our application within a few more hours, and then asked, "How do you plan to get her?"

Umm, oops!  Lynchburg, Virginia, you say?  

Well.

Babygirl had her new doctor's appointment scheduled for Tuesday, and it was on the border of Delaware and PA.  I looked at the map, and it was already more than 1/3 of the way to Lynchburg.  So.....we went.  Curlygirl kept Simon, we took the truck, Maybelle and Babygirl and headed south.  We arrived yesterday and met Miss Maggie, and discovered a couple of things.  

Maybelle cannot possible be a purebred Redbone.  She was nearly half again as big as Maggie.  There probably is some bloodhound hiding in there.  And we discovered that, as beautiful as Maggie is, and as much like Maybelle as she looks, she didn't touch our hearts at all.  Not one of us felt that pull.  

But sleeping quietly in a kennel nearby....

...was this handsome man.  His name is Larry.  He's four.  He was billed as being "good on a leash" (and if by "good on a leash" you mean "willing to stand perfectly still and not move unless you drag him" he's AWESOME on a leash LOL) and he is housebroken.  All three of us simply decided that no matter what pretty face we thought we were chasing, this was the one we had truly come for.  

So in 48 hours we went through 6 states and the District of Columbia, up and over the Blue Ridge and got us a dog.  

And SHAME on the local rescue groups who STILL have not contacted us.  Given how low the fees are in VA to adopt ($75 compared to $250 here) we broke even with travel, gas, overnight camping and a meal at Buffalo Wild Wings.

DeeDee

Fresh Start....

Babygirl and I met with her new neurologist today.

I walked in and handed her three lists:
1) The medications she is currently taking.
2) The medications she has tried in the past.
3) "The List" we developed of every of all of the medications that have ever been used by ANYONE for migraine that she is allowed to try given the limitations of her transplant medications and kidney function (it is three pages long, single spaced, with comments on almost every medication outlining any potential concerns and what to do about them).

She took a thorough history.  She listened carefully and asked questions when she wasn't sure she'd heard correctly.  She made Babygirl herself talk about the headaches and how it's been.  And then she told us a few things:
1) She isn't the best headache specialist in her group, but she will make sure that is who we see next time, at which point it would be logical to decide whether to proceed with more Botox or not.
2) There are medications that are not on any of the above three lists, and we are going to try two of them once we clear them through the kidney team (she will let US do that since that seems more efficient to her. Imagine her trusting us to actually check it ourselves....).  We are to start low and adjust weekly and call EVERY TWO WEEKS with a progress report (what, not every three months??)!
3) Their group has a pain management team and she thinks Babygirl should go.  They don't do medications. They don't do counseling.  They do biofeedback and other mind/body connection training, and it's a short but reportedly effective program.

This doctor will coordinate with the provider she wants us to see and the pain management people to try to minimize the number of trips we have to make, since the new doctor is actually located in Wilmington, Delaware.

Hell, what's a few more miles?

DeeDee

Snapped....

Babygirl had her second set of Botox injections on Monday.  The first set resulted in a slight decrease in morning headaches for a few days and then she went back to her baseline.  According to the studies, about 15% of people who have no response to the first set will respond to the second set, so, I paid the $300 co-pay and set up the appointment (knowing, in advance this time, that it will be $1000 out-of-pocket for the procedure.  You gotta do what you gotta do).

After the NP finished the injections, she said, "I don't think you need to come all the way down here in six weeks to tell us how it went.  Just give me a call, and if it isn't working we can talk to nephrology about what the next step should be."

SNAP.

I said nothing.  Not one word - because ANY word I spoke would have gotten social work or security called on me.  I nodded, accepted the discharge papers and left with Babygirl and drove home.  I had plenty on my mind, of course:  Maybelle was acting sick (good actress, it turns out LOL), I'll need to catch up on work, I'm a little sleepy to be driving so far...

Underneath it all was a dark, simmering rage.

These jokers have been working on Babygirl's headaches for over THREE YEARS.  More than two years ago I made one of them develop a list of EVERY SINGLE possible medication they might EVER consider using for her headaches.  I made them do it because I was sick and tired of the "we have to ask nephrology" back-and-forth that took, on average, three weeks for every medication change and dose adjustment.  She's been on the same useless regimen without an increase or adjustment for over EIGHT MONTHS because the HEADACHE doctor is worried about her KIDNEY.

The list is in her chart. It has been vetted by the kidney specialists and the pharmacy team. It outlines what medications can be used, what precautions must be taken if they ARE used, what to watch for, what blood work to order.  ALL THEY NEED TO DO IS CHECK. THE. (add whatever inappropriate descriptor YOU prefer here) LIST.

Tuesday I called our local adult headache specialist and outlined my problem.  He gave me the name of two headache clinics, one in Chicago (OMG!) and one in (you guessed it) Philly.

I called Jefferson University Hospital.  The headache clinic WILL NOT see anyone under 18.  They refer me to a pediatric neurologist (interestingly enough, not the headache clinic at CHOP).  I called, expecting that it would be a few months to get in.

We are going Tuesday.

Getting records to them by then is the big challenge.  Nephrology is willing to send MRI reports and medication lists but not neurology notes.  I'm not all that excited to talk to neurology to ask for those notes, you know?

I sincerely hope it's not a wild goose chase.  At the very least, I hope it opens the door to some new possibilities.

DeeDee

Good Reports All Around....

Babygirl and I left for Philly Sunday afternoon, arriving in time to have dinner with my older brother in a lovely Chinese restaurant.  We laughed over memories of the first time we had ever had Chinese food:  It was a five-star restaurant owned by Danny Kaye in San Francisco. They made my 6'6" brother borrow one of their suit jackets to meet their dress code (picture monkey arms sticking our of short sleeves LOL).  We were with my Aunt Squirrely's family, so we were a party of eleven, seated at one enormous round table with a big lazy Susan in the middle.  The food was amazing, but what was more amazing to me was what we each remembered specifically about the experience.  My brother remembers wishing our parents were a bit more sophisticated, like our Aunt and Uncle.  I remember them being tense with the wait staff about the quality of the rice wine.  I preferred unsophisticated, apparently.

Our visits to the doctors were fine.  Since we had our labs done locally, there were no surprises. We already knew the kidney was doing fine.  There is an odd side effect from one of her headache medications that make her blood too acidic so we need to take more medication to try to help that (up from 5 pills twice a day to 7 of an over-the-counter thing that I literally by by the thousand).  Babygirl tolerated the Botox injections without too much difficulty.

Between appointments we had four hours free, so we walked half a mile to the Indian food kiosk and got lunch, got on the subway, overshot out stop and walked half a mile through downtown Philly to the historic district and took the free walking tour of the US Mint.  It is way cool to watch thousands of fresh pennies running down a conveyor belt!  My phone says we walked 5 1/2 miles.  Babygirl's says we walked 6.  Things that make you go hmmmmm.

But....while we were gone, Maybelle took a turn for the worse.  Hubby sent me a text saying she wouldn't eat or drink, and he couldn't get her up to go outside.  He was really upset, and so was I.  Was I going to make it home in time? Was it time to call and make that last visit with the vet?

So after our last appointment we got in the car and came straight home, cruise control on 72 mph, no breaks.  As soon as I came in the door, Maybelle got up off of her 'deathbed' and came to me, tail wagging, with a big doggy smile.  She immediately asked for a walk, and when we got back she at an entire bowl of food and was prancing around like a puppy.  Hubby, while clearly relieved and happy, kept looking at her and saying, "You little S***.  You scared me to death and made me cry and you were just being a BRAT!"  It was completely hilarious in a totally heartrending way:  She knows she is sick and doesn't want me to go away right now.  Don't worry baby, it's three months before I have to go back to Philly.  By then you'll be over the Rainbow Bridge and all better.

DeeDee