Friday, March 24, 2017

Bo Jangles the dog

I think I mentioned before that our vet told me the first time I took Bo in for shots that he hadn't actually worked with quite such a dramatic puppy before.  

And I mentioned that's just what we need: more drama around here.

I don't think I have mentioned yet, however, that we hired a dog trainer to help us know what in heaven's name to do with this dog of ours (we'd love her to be a good therapy dog for Lucy), and he let us know in no uncertain terms that Bo is one of the most "spirited" dogs he's worked with.

Great again.

This is how we spent the first month or so with this puppy of ours:

That and trying our darnedest to get her to go potty outside.  Yes, we tried the bell and everything everyone mentioned back in this post back HERE, (thank you by the way for all those great comments!), but she was a pretty slow potty learner at first.  And non-biter.  And non-jump-up-on-everything. (she is a puppy after all...)

Which has resulted in us removing every rug from the area of the house we allow her in (kitchen, family room, mudroom) least for a little while until she gets better at all this jazz.

She has ripped two pair of Dave's suit pants, caused some good debates between me and Dave (I think she loves him the most and he loves her not-very-much...YET!), and she has changed our way of life around here quite a dramatically.

We have to keep an eye on her all the time...or carry her with us:
She gets into everything we do:
...and is getting big enough that she is getting into even more.

She has to be right next to us no matter where we go.
(But I'll be honest I kinda love that.)

But some days I'll admit I have definitely felt pretty "whoa is me" and kind of like a martyr "taking one for the team."

So would we do this over again? 


Because just look at this puppy:
(My friend took that picture...thanks Maureen!)

And look at these kids:

We really do adore her in spite of how she's turned things upside down around here.

The girls STILL come home from school and get over-the-moon excited having her run back and forth to them, waging her tail so hard that her whole body is waging and shaking with pure glee.

She provides endless entertainment for the neighborhood.  Here's one of the young women holding her doing yoga for YW one night:

And she's already the best little companion for Lucy.

Nothing can quite describe how it makes my heart feel to look out the window and see this:

 These girls cannot get enough of her.
 And she puts up with them so well.

She provides some serious entertainment when we give her baths and all her fluff sits wet against her tiny body:

And she just "graduated" from her training...
...which means...drum roll:  we have to keep training ;)


But at least we now know what to do and how to act and react to this new little family member of ours.

My sisters and I joke that I have a "mantra" I repeat to myself every morning:

"I like dogs."

Repeated three times.

They joke that I'm not ready for the "I love dogs" mantra quite yet, but I'll get there.


But really, I do love this dog of ours.
She has added something to our family that has a lot of potential :)

And I like it.

Thursday, March 23, 2017

a money system that works addendum

A blog reader (Dave Stroud) sent me these calculations yesterday and I loved them (thank you, Dave!).  I loved them even more when I read them to my daughters and their eyes lit up with excitement.  Maybe this is the boost they need to start working on those job charts a little more diligently!

The explanation for this "money system that works" is back HERE.

Here are the calculations of what kids can earn if they earn their money:

I constructed a little chart that shows how much money is earned between ages 8 and 18 if a child is paid their age in dollars every week, they save 20% of that amount every week, and their savings accrues 10% interest every quarter. 

If the child is perfect and they are paid a full amount each week (we wish, right?), this is how much they will accumulate:

Starting at age 8: $0 
By age 9: $106
By age 10: $275
By age 11: $535
By age 12: $929
By age 13: $1519
By age 14: $2396
By age 15: $3694
By age 16: $5608
By age 17: $8423
By age 18: $12,558

That could just about cover all of their college tuition if they attended community college, then transferred to a cheaper 4-year university.

Or it could pay for a 2-year mission :) 

Yeah, pretty great incentive right there!

Tuesday, March 21, 2017


I cannot believe how speedy quick that last week zipped by.

Oh boy.

We just arrived home on the red-eye from visiting our Elle for spring break.  
Not much better than having those four together...except having their brother there too.  Man alive did we ever miss him!

We still have sand in our hair, Claire and I have cold sores popping out, we are all begging each other for back scratches to appease our sunburns, and we are heavy-laden with golden memories that make us smile even through the thick blur that these first few hours home have left us in. 

We got in at 5:45 am and by 8:00 we had run five loads of laundry, unpacked, picked up Bo (with some serious great excitement) and sent all the girls off to school.  I hope they survive!  

I can't wait to write about our grand adventures over there, but for now I'm off to fill up the fridge and try to situate life around here, and just wanted to say hi.

We have come home to trees already heavy-laden with thick fresh new foliage, bright green glistening in the sun, spring has sprung here in the desert and it is always good to be home.

But boy howdy we're already sure missing that Elle of ours!  And those velvety green mountains of Hawaii that are her temporary home.

Wednesday, March 15, 2017

a special date with our 10-year-old

A few months ago Lucy's left eye started to twitch.

And then it started to wiggle.  

And since that moment, it hasn't stopped.

When you look at her, that eye does it's own little dance.  And it's called nystagmus.

For some reason I thought that was a pretty normal thing for BBS kids, but even so, it scared me.  Was it a significant clue leading to more retinal degeneration?  Was it something she needed more powerful glasses to fix?  Was it something we could fix, or would it lead gradually to the other eye as well, both of them bouncing around rendering her unable to concentrate and learn and grow with those eyes with everything she knows in life thus far?

So I called to make her an eye appointment.  I found that our regular eye doctor, the one who has worked with a couple kids with Lucy's same syndrome and who we really like has started only working one day a week and was booked for months on end.  I think the poor receptionist could tell immediately that I was a little horrified at that news and she tried to comfort me by letting me know the other doctor in the practice was just as great and that she could get us right in with him.

But did he have experience with BBS kids?  I asked?  Well, no, she admitted.  But he has been in the practice for just as long and will be able to help, she promised.

Right then and there it hit me how crazy this syndrome is and my dragon mother instincts came through.  I explained that the eyes work really differently for these kids.  Their retinitis pigmentosa is somehow different from other degenerating eye problems and I explained passionately that I needed our normal doctor.  That, of course, didn't change the fact that he was unavailable so I asked if he could please discuss the syndrome with our normal doctor before we came.

I think in desperation to get off the phone with this crazy mother she half-heartedly told me that sure, she'd try to be sure they talked.

But sure enough, they didn't, and I sat there once again, as I have done so many times before, trying to explain to yet another doctor how Bardet-Biedl Syndrome works.  Trying to regurgitate the findings I've listened to so many specialized doctors at BBS conferences spill out over the years, but failing miserably because I haven't been to medical school and I can't for the life of me remember all the terminology and exactly how those rods and cones are somehow different in Lucy's eyes.

And that is always frustrating because I'm not a doctor and have never been to medical school yet I know enough to know that things are different with this ten-year-old of mine and I need specialized help.

The doctor was quite worried about the nystagmus and how Lucy's eye wouldn't stay put.  He was also surprised that her eyesight had apparently changed quite dramatically from her last appointment.  Better, in fact, which was puzzling to him.  And to me too.  He changed her prescription and recommended strongly that she needed an MRI of the brain to try to figure out the disconnect causing that wiggly eye.

Talking to Dave that evening we decided it was time to take Lucy back to Marshfield Clinic.

I've written a bunch about this before, but to make a long story short, there is an outstanding Nephrologist there at Marshfield (Dr. Haws), who worked with some BBS kids years ago and felt compelled to help their families.  He realized how difficult it was for these kids to get the care they needed with doctors unaware of this very rare syndrome and he decided to start a clinic there with more specialized doctors for each aspect of the things that need special attention in BBS kids: kidneys, heart, behavioral health, and nutrition to name a few.  We got to go visit there a few years ago when all this BBS mumbo jumbo was still so new to us, and it's hard to express how amazing it was to have the doctors know what to look for and how to advise us.

We got the appointments scheduled (and I act like that was all easy, but man alive that's a lot of coordination with the great lady Brenda who was in charge), made our flight arrangements and headed out on our special little mommy/daddy/Lucy date to the wide and spacious fields of the Midwest.

We flew in on Sunday evening to Minneapolis, rented a car (where Lucy read me what it said in Braille on the pin pad and we were both pretty proud of that:
...and then drove for nearly three hours through tiny little towns marked with unique barns what seemed like every hundred yards or so...(I tried to take pictures as we whisked on by...)
...and pulled in to tiny little Marshfield where that great clinic is.

Just like last time we were there, Dave and I marveled at how crazy it is that so far away from any airport or any large towns for that matter, lies this wonderful place called Marshfield Clinic that is filled with amazing doctors (who also happen to be incredibly kind and conscientious) and state of the art medical equipment.

The best thing of all is that each doctor we visited knew exactly what BBS is, how it affects each part of Lucy's body, and was concerned about how all those parts fit together.

You just don't get that anywhere else for these kids and it felt luxurious.

We were up bright and early to meet with our scheduling nurse Brenda at 7:10 and went from appointment until a little after 5.  It was a long day.

We started with labs and an ultrasound for Lucy's heart, a Cardiologist appointment followed by and echocardiogram and found out Lucy's heart is perfect, (even if it's on the wrong side...she has situs-invertis).

We went to Ophthalmology and found out nystagmus isn't actually as common as we thought in BBS kids, and we will need that MRI.  Thumbs down on that, but Lucy was pretty great about it all :)

We went to Physical Medicine where we realized there's not much we can do to help turn Lucy's outward-pointing feet but found out, completely unrelated, that she has scoliosis.  And after an x-ray we found that it's bad enough scoliosis that she may need to wear a brace.  Shoot. Also not common in BBS kids.  We visited with a Behavioral Health specialist where we found that Lucy is on the really good side of behavior compared to so many other kids and we should celebrate instead of worrying so much.

The last appointment of the day was with dear Dr. Haws the Nephrologist where we were overwhelmed once again at how wonderful he is and how grateful we are that he's so willing to work so hard for these BBS kids.  We learned that Lucy's kidneys look perfect and are functioning perfectly.  We sat and discussed all the things that are going on with the clinical registry and research right now since Dr. Haws is in-the-know about all that.  Some of the things we hoped would be able to help Lucy's eyesight may not work after all (which we kind of knew after the conference last summer), but there are some pretty hopeful things coming along for help with obesity.  Only time will tell.

As we walked those hallways going from one doctor to the next my heart was so swollen up with gratitude for that "one-stop-shop" with hardly any waiting and incredibly conscientious doctors and staff who were so very helpful...there are not words to express my gratitude and what that means to Dave and me.  To Lucy.  To our family.  And to so many other families.

Lucy was a pretty great sport through this whole thing.  She was a self-described "trooper" as she wrote in her diary during the long ride back to Minneapolis (at the end of this post).

More barns: 

The craziest thunderstorm I've ever seen (that was pretty scary)...

...a quick stop at the Mall of America to top everything off in a positive way...

...and then back home to some sisters...
...and a dog who sure missed her.

I think her diary wraps it up better than I can:

I sure love that trooper of ours.

Monday, March 13, 2017

2017 snapshot

I try to do these "snapshots" with words at the beginning of each year and I'm always lucky if I get to it earlier than the summer.  Ha!  So I'm feeling pretty good that I'm posting this in March.  Here's our "snapshot" of what life is like for our family in 2017:

We have three girls at three different schools.  One gets to school in a carpool (that leaves at 6:50), the second rides her bike with friends (and leaves around 7:45), and the third sometimes takes the bus but more often gets a ride with me on my way to my boot camp class at 8:15.

We are card-game-crazy.  We play "Scum" and "Lucky-Unders" any chance we get.

We finally found a "show" to watch that my parents got us addicted to over Christmas break.  It's called "This Is Us" and it is really well done and makes you think about a lot of things.  We went crazy watching episodes while we were up in Utah with my parents, but we've only found the time to watch one episode since we got back.  We are not very good television watchers around here.

We miss Max and Elle terribly.  But at the same time we are relishing having our youngest three in the spotlight.  As much as things haven't slowed down like I thought they would, it is still easier to gather everyone together and Grace is shining as the oldest one home.

We hear from Max on Sunday nights (his P-day is Monday, but he's 16 hours ahead so we get his letters on Sundays).  We look forward all week to hearing from him.  Sometimes his letters have more to tell us than others, but in general every single one is extremely positive and upbeat.  He loves Taiwan the the good people he speaks with every day.  And he's lucked out with really great companions.  He hit his year mark in January which was quite exciting around here.

One thing I love about Max's letters is that he's always gives everyone else credit for everything good that happens.  It's always his companion or investigator's idea.  Which may very well be true, but I love that he's so quick to give others credit and love.

We usually FaceTime Elle each Sunday afternoon while we're whipping up Sunday dinners.  I adore hearing the questions she asks her sisters and her genuine interest in their lives.  She is so full of energy and exuberance for life.  And she ADORES Hawaii and thanks her lucky stars daily for her decision to go to school there.

I have transformed into a soccer mom.  At least as "soccer mom" as you can get when you have good friends who carpool and help with your daughter so much, but it seems like we sure spend a LOT of time at the soccer fields.

As much as Claire is loving soccer, she's still not willing to call it quits on other sports.  Which is tricky since soccer monopolizes her time.

Grace is the most sparkly cheerleader ever.  She is so glad she's had this opportunity but is pretty excited to shift over to tennis for next year. (More about that HERE.)

Grace, Claire and I have Young Women activities every Wednesday night.  I work with the girls Grace's age and I love it with all my heart.  We have really good youth around here and I am so grateful for their good influence on my children.

Lucy goes to "Activity Days" every other Wednesday night as well, and at first she was a little worried about leaving Dave as a lone man in the house while all of us girls were gone.  But she soon realized that he pretty ok about the whole arrangement.  Ha!

Dave serves on the High Council in our stake and helps with missionary work.  He is learning a ton through that service and loves thinking about Max through it all.

We are horrible at job charts lately.  There will be weeks that go by where they will sit on the wall glaring at us, begging for some attention.

We do get practicing done though.  We are not piano experts around here, and the girls only practice for 20 minutes each day, but they are progressing and have a wonderful piano teacher who comes every Friday morning at 6:15 and does a half-hour slot of teaching with each girl.

Grace and Claire are starting to play the hymns at church for the songs in Young Women and they are pretty glowing-happiness about that.

Lucy stands up to learn new piano songs since she can see the notes better that way.

Claire sleeps with her blanket we made together ages ago every night and has to carry it around the house.  Her blanket her Nana made her when she was a baby is usually right by it's side, but lately it is so tattered I think she's worried it will disappear if she keeps lugging it around.

Grace and Claire are starting hard into tennis.  They go three days a week for a couple hours each time.  Sure hoping it will pay off and they can fall in love with that game.  They come home pretty happy so that's a good sign.

We have a dog.

Let's repeat that one:  We have a dog named Bo Jangles.

And I still cannot believe that little fact I tell you!

(The fact that we have a dog AND that she's named Bo Jangles of all things.  Ha!)

A real update on that coming, but I'll just say she arrived almost two months ago and the girls are head-over-heels in love with her.  There have certainly been days we are exasperated beyond measure, but most days the glittery wide smiles of our girls as they snuggle her close makes all the trouble worth it.

We still do mornings just like we have since our first hit high school: scriptures at 6:30 with one of us while the other makes breakfast.  We started D&C in January and are still only on section 10.  But some of those verses lead to some pretty interesting discussions so we take our time.

Also, Bo sure makes things a little tricky in the mornings with her excitement to be awake and to be with us and to jump on everything she can manage while wagging her whole body in pure glee.

Lucy's eyesight is rapidly diminishing.  We are seeking help in every way we can and also trying to remember to discuss the world with her in detailed word so she can associate with all the things she hears and feels when/if her eyesight is gone.

Lucy is meticulously clean.  She wants things put back just so and takes pride in keeping her room just so.  Grace is the opposite (as most teenagers are), but is working on it.  Claire is somewhere in between.

With a house full of three girls there is often drama going on around here.  It's all about who took what and who talked in a mean voice and who wouldn't let who do whatever and who had a mean look.  Ha!  Sometimes it cracks me up, other times it drives me nutty, but always it makes me extra grateful that in spite of the drama there is a lot of love going on around here.

The goal is always to have dinner ready at 6:00.  But then Claire is gone to soccer or the girls aren't back from tennis or we have an extra friend or two at our house so more often than not we don't quite make the 6:00 goal.  But Lucy sets up the table every night and we sit down with whoever is around.

Sometimes the dinner table is commotion-filled and crazy, sometimes it's quiet with just one child home.  Sometimes we bust up laughing until we cry, sometimes there's crying because they're so darn mad at something or other (and you can guess who that "someone" is...).  My favorite meals are the ones where someone will bring up a memory and we will talk and talk and reminisce about all those golden threads we share.

Still, all these years later, we have a Family Home Evening lesson and more formal meeting on Sundays, and then have some kind of an activity on Monday nights.  Dave has done a good job reminding me not to let anyone sign up for anything on Monday evenings.  Those are sacred.  And I'm so glad because there's nothing like holding on to these three remaining kids we've got around here with all our might :)

Grace is delighted to have her driving permit and drives every chance she can get.  She can hardly stand it that she gets to get her real license in three months.  I have to admit I cannot wait either.  After having other drivers around and losing them, it will be so great to have another one around!

We love living close to so many of Dave's siblings and one of mine.  We love gathering with them and having Josh over every Sunday for dinner.  If we could only recruit more over here to the desert...

That's all for now...that's where we are so far for 2017.  It's a good new year.

Friday, March 10, 2017

high school love and memories...a mini reunion from the good old days

Even now, having three children who have traversed the halls of our giant-sized high school,  I sometimes find it strange that so many years have passed since I was in their shoes.  

In some ways it seems like I was just there.

The memories as a whole are fading and filling gradually with growing, sometimes gaping holes, but there are certain vivid ones: 

My friends and I, all those years ago, cruising by boys houses that we liked, our seats reclined so no one would see us (I'm sure they would never recognize the car we drove, right?).  Rollerblading late into the night.  Crazy shenanigans in the high school parking lot (a friend driving my car with another friend on top of the car...the teenage brain is not fully developed I have to remind myself) when my Dad happened to drive by the high school and see us (all-knowing parent eyes), and come take away my keys without even a word.  (I knew I was in deep trouble on that one.)  The football games where we couldn't seem to win (our high school made the national news for the longest high school losing streak), the basketball games with my whole heart in the game, the pep rallies, the never-ending homework, the good teachers and the bad.  We had an open campus so we could go to lunch wherever we wanted, but more often than not we headed across the street to 7-Eleven where I would purchase a chocolate covered doughnut and a small box of cheese nips to get me through the rest of the day.

There were the dances, wild with activities and finding dresses (or making them myself with oversized floral upholstery fabric...for real), 
(I could have sworn I have posted more of these crazy wing-dinger dresses on this blog somewhere but I can't find them...)

...the drives, the boyfriends, the dear friends, all trying to figure out who we really were and making decisions that would affect oh so many other things in life.

I adored those years.  

I never wanted them to end.  Elle reminded me so much of my own high school self way back then as her graduation approached last year and she bemoaned the sad, mournful fact that "the end" was coming whether she liked it or not.  I reminded her she had no idea what was coming, life keeps getting better.  

And it does.

But I'm so grateful for the foundation that was built in my high school years.

Of course my friends are what made it so great.  I've mentioned before how painfully shy I was.  And I don't now how it happened, but somehow in the whole ups and downs of high school this group of girls gradually formed into a tight bond.  One that is still going strong twenty-seven years later.

Yes, you read that right.  Twenty-seven years!

And most of those close girlfriends who have changed me for the better for over thirty years came to the desert to visit last weekend (we missed you girls who couldn't come!).

They came five years ago (back HERE) and we decided it was time to get together again and made it happen.
How I love these girls!

I adore that we can pick up right where we left off any time we get together.

We share so much history it's crazy, and sometimes it just does good to the soul to sit and reminisce on the good old days, and discuss and dissect and rejoice in the new.

Which we did.

The whole entire weekend.
For one of our meals we went to the very same restaurant we went to when they came five years ago, sat in the same kind of booth, and all ordered the very same Thai steak salad that we all did last time they came.
...and it was just as good.

We took bikes out from our hotel and did a little mountain biking.
On a gorgeous spring morning.
I loved sharing the desert beauty with them.
Had to have an analogy for these Saguaro giants that had been transplanted (above).  We decided those stakes supporting them were kind of like our group of friends in high school and beyond.

Supporting and holding up (at least most of the time :).

We sat by the pool...
And talked and talked, and wrapped up as the shadows inched closer and closer enveloping us in the evening chill.

We ate the best food.
 ...where we sat around tables for hours on end (literally) and just talked and talked until deep into the night, and then extended those discussions back to late late in our hotel room.

The last evening, I brought them home with me before we headed to the airport.
 I loved that my girls got to meet them.
Oh sure, they've met them before, but there's something about that girl up there second in from the right being the exact age we were when I got home from our family's six month stay in England and these relationships started to cement into place.

How I hope my children can all chose and keep friends like these who will be those stakes to hold them up (like those Saguaros we saw at our hotel) through the ups and downs of their lives like these girls have been to me.

There was a gorgeous sunset to wave them off at the airport, and wink goodbye to a great weekend.
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