Sunriver and Airbnb

Lily starts 1st grade tomorrow.  She had a hard time falling asleep, more nervous than I expected about getting homework this year.  She keeps asking me when she can walk or ride to school alone - a bit too confident in other areas.  Will be nice that I don't have to escort her to the classroom anymore. 

It's been an especially fun month mainly because our long awaited summer family trip to Sunriver Oregon finally happened.  I had high expectations and they were exceeded.  Sunriver brought its A game with perfect weather and a house equipped with so much from a recreational and home amenity stand point.

Sunriver Highlights

1. Seeing thousands of toads hopping around during our hike at Todd Lake

2. Watching my parents play a fierce game of ping pong.  I forgot how good they are.  

3. Playing pickle ball doubles against Ken and Lolo and Lolo asking so earnestly in the middle of the game "who plays this by choice?"  

4. Watching my kids lovin' on baby Elliott, truly enjoying him.

5. Listening to my kids and their friends Kiki and Benji sing Twinkle Twinkle along to a NY Philharmonic French Horn player retiree (happens to be Grandpa Bill). So cool.

6. Every single big group dinner minus the few Paul tantrums.  

7. Opa and Paul riding the tag-along bike together.  Never thought I'd see Opa on a bike again.

8. Spending time at the Pirate playground in Bend - kids were playing so well together.

9. Getting to swim most mornings in the beautiful heated outdoor pool on very cool mornings watching the sun go up as I breathed to the side.  My kind of bliss.  

10. Seeing how into the Old West Exhibit Lily and Elise were at the High Desert Museum.  They truly thought they were at Laura and Mary's house.  Obsessed is probably a better word for their level of interest.

11. Seeing the kids be so comfortable with every adult that stayed in the house plus playing away with their friends Benji and Kiki for a few days.  Up to 6 adults to the 3 kids really helped make it feel more like a vacation.  

12.  Getting to spend an afternoon with Lolo like old times.  We should have had that 2nd margarita.

13. Going to the 9 hole putting green at the Meadows Course and the driving range with Paul and seeing him totally into it and truly trying his best with such a good attitude.  I LOVE playing sports with Paul.

14. Riding the tag-along bike with Paul even if he was a back seat rider telling me what to do most of the time. He must get that from his Opa!

15. How even more obvious it is to me that right now Elise is the lover in the family being so sweet to everyone giving hugs and chatting away, even to the deer that visited us regularly.  She was in her element on that trip.  

16.  Seeing how relaxed and quite happy my parents were there...finding golfing buddies, walking buddies, shopping buddies and absolutely zero complaints about the weather by my Mom.  

17.  The sweet potato fries at the Sunriver Brew House

18.  When Lily fell off her bike and got some bad scrapes, we took her to the first aid station nearby which was a small room.  The entire group of us on that ride (8 of us total) all went to the tiny crammed room to support Lily while she got band aids put on.  Felt the love.  

19. Geocaching was a hit.

20. The biking.  Nate got to do mountain bike rides, road bike rides, and we all enjoyed quite a few family rides cruising around on all the bike paths.  Super fun.  

Paul learned how to ride a bike this past month - even easier than it was with Lily.  Elise prefers to walk her bike and does so proudly.  No interest in riding yet.

 French Horn concert by Grandpa Bill. He was so great with the kids.

 Proof my Dad took a hike

 Art time in the rocking chairs on the front porch.

 Nate and Eric after a mountain bike ride.

 Obvious these deer have been fed before - they had no fear coming close to us.  Elise had no fear either.

 Lolo time.  She brought presents!

 Beautiful hike along Deschutes River near Bend and Benham Falls.  Oma is the master at finding the right walking sticks for the kids.

 Lovin' on Lolo

 Elise showing Lolo what she can do now on paper.  Elise may not have learned how to ride a bike this summer but she's very much into art, coloring in the lines now, and writing words. Paul still prefers scribbling.

 Love the expressions on all their faces - kinda captures them well.

 Todd Lake with Oma

 Was a close match but Opa won 15-13.  Next time Oma.

 Elise getting to push an actual baby in a stroller for a change.  Thanks E.

 Opa and Paul were inseparable at times including at dinner when Opa would make Paul eat something healthy off his plate so he could measure him to see if he grew.  Good strategy.

 Group dinner shot

 Sisters at Benham Falls.  Who doesn't want to hike in a pink tutu?

 Elise lovin on Jeanne.

I do want to add that the other big high from August is that our first attempt at Airbnb was a huge success.  We hosted 3 different sets of guests and it went so well that I want to move out of our house and do it again right now.  I was in my element getting to meet people and help them get settled in a new town for their visit and playing host.  I know I enjoyed doing that but didn't realize I'd get such a high from it after it went so well.  We got to host a woman getting ready for her wedding in our home and another guest just happening to see a Michigan sign in our garage led to a realization that she was in the same Intel Rotation program a few years before us after also graduating from UofM.  Such a small world.  

Ok school year, bring it.  Good Night.

Macrodactyly Update, Dr. Mosca, Hemihypertrophy, and Wilms Tumor

Over 3 years ago, I wrote my first blog post on Elise's rare foot condition called Macrodactyly, a condition she was born with.  Because of that post plus a few others over the years to keep track of what we've done, I have connected with other moms around the world from Greece to Tasmania to Chicago who are in a similar situation.  So grateful for the connections.  I hope this blog post connects me to even more.  This is so flippin hard to deal with alone.

Because of the contacts I've made via the blog which led to a private Facebook group, we got the very good advice to travel to Seattle to meet with Dr. Vincent Mosca at the Seattle Children's Hospital.  Now that we are stateside again, we are in need of a Dr. who can help Elise with whatever is to come with her special condition.  Our friends did not disappoint.  He's awesome.

Elise was born with Macrodactyly of her right foot - specifically big toe and 2nd toe.  At 1.5 years, we had her 2nd toe resected, the growth plate of her big toe destroyed, top tendon of the big toe cut to make the toe not curl upward as much, amputate the tip of her big toe, and debulk as much tissue as possible.  That 1st surgery got her into normal shoes and she continues to have no pain or noticeable issues of functionality.

It has now been 2 years since her surgery and Elise is still wearing normal shoes (with a lot of give to help with the extra thickness of her foot) and moving around just fine pain-free.  We have noticed that her big toe is pointing upwards more and the thickness of her right foot is more pronounced.  Our trip to Seattle last week was to start a relationship and get his advice on what kind of treatment he advises for Elise in the future when she can't fit into normal shoes anymore and/or her foot's functionality degrades.  Dr. Mosca explained that there are 3 issues combining to make her big toe grow upwards now: 1. The extra tissue growing on the underside of her foot is pushing it up. 2. The tendon that was cut during the 1st operation has grown back together and 3. The growth plate destruction wasn't 100% successful (they literally drill it from the top down and might not have reached all the way to the bottom leaving some time for the bone to keep growing until it said "guess I'm done growing now.").

We left with more of a diagnosis though than expected that threw us for an emotional loop this past week.

The right leg connected to the affected foot is not very noticeably different from the other.  I have my days when I think her butt and thigh look a little thicker than the other but I chalk it up to heavier foot = more muscle, and most days I don't notice a difference at all.  Dr. Mosca confirmed with x-ray that the bones in her right leg are longer than the left by about 17mm. You can only tell when you lay Elise flat on her back and align her legs and notice the position of her ankles a little bit off.  He has diagnosed her with hemihypertrophy and recommends an operation to stop the growth of her right leg if it becomes more than .75 inches different which he predicts would possibly happen later in her youth, maybe when she's a young teenager.  He said if it looks like that will be the case then they can start taking more precise measurements and predict pretty accurately what the length of her left leg will be so that we can decide when to stop the growth of her right leg.

Also, because she has hemihypertrophy, she has a higher likelihood of developing a kidney tumor called Wilms Tumor while she's a kid.  Not cool.  He recommends an abdominal ultrasound every 3 months until age 8 to monitor.  We stopped ultrasounds after her first surgery 2 years ago because it was believed at the time to only be isolated to the foot.  We are happy to report that as of this morning's ultrasound in Portland, she showed no sign of a kidney tumor.  Just a few days of freaking out and losing sleep over it.  Was a bit surreal to be watching my 3 year old daughter go through the same procedure I have been through whenever I got a pregnancy ultrasound - too soon!

Time has been on my side with the emotional rollercoaster I've been on this past week.  My perspective is healthier and words of comfort from friends and family are truly helping now.

Here is the last picture we took of Elise's foot (just marker on her foot courtesy of Elise) several months ago and a picture just to put a face to all this typing about her condition.

June 2015 - For the books.

Our June 2015 is one for the books. Damn it was good.  Just the feeling of being an American with the recent Supreme Court decisions and general tone in the wake of triumphs and tragedies recently has given me a renewed sense of pride and hope.  I used to sing Amazing Grace to the twins a lot when I rocked them at night and would choke up more often than not for the innocent beauty of the moment (and fatigue induced lack of emotional control) and since President Obama's eulogy, I can't imagine not being moved to the core every time I hear it now.    Maybe this energy built on pride and hope is fleeting but I'm grateful for what it is right now.  I wish for this wave to pick up even more momentum when it comes to making an effective change to our gun safety laws. Struggling to figure out how to help this effort but not giving up.

As for our own little world, these videos reflect how awesome our month was.







Oma and Opa are back for the summer and hit the ground running.  Paul and Elise had their first sleepover with them and it was a hit.  Here they are knocking on their door super excited to be let in for their big night.

Summer is off to a fun and busy start full of celebrating, playing sports, dancing, and hanging out with friends. My foot is feeling much better within the last couple weeks, thank God.  Only took a year! 'Bout time. Hello Tennis.

Thanks to Lolo for visiting us once again.  My kids expect Lolo to come whenever they ask her to and she pretty much does.  Best Aunt ever.

Goof balls

Rose Garden fun

Happy Hiking

Surprised my Dad with his first PDX trip to Costco for Father's Day. It's Opa's Disneyland

Way too much good stuff happened to even take the time to harp on the bad stuff.  Some Ass breaking into our garage to steal a bike, a few of Paul's epic meltdowns sprinkled in just to keep us on our patience toes, Elise's inability to not write all over the walls,  dealing with fleas and ant problems....meh...whatever.  It's going to take a lot more than that to really ruffle my feathers right now.   June 2015 is in the books.

Good night. 

Nine years, six years, and 2000 meters

All in all, May was a good month no doubt.  I was about to say it didn't feel that busy but looking back there was a lot going on and we hit a lot of milestones.  And some cute moments too.

 First up was our anniversary, and Lily helped us celebrate with a nice sign to hang on the wall.  Nine years, wow.  We celebrated by getting a babysitter so we could go for a day date.  Five hours to go on a leisurely bike ride through the city, go to an estate sale, eat at food carts, and see our first movie in a theater together since Lily was born.  That's right, it had been six years since the two of us made it out to a movie.  Considering it used to be about a once a month thing for us, it had been a LONG time.  We need to get out more, who's ready to babysit?


Pause for cuteness... and ice cream.

Lily's six!  Six!  That sounds like such a big number to me.  Last year she was wrapping up preschool and now she's about to finish kindergarten, a big reader and ready for some tennis lessons this summer.  She had a few friends over to celebrate with another Nicole scavenger hunt, a project to make fairy gardens to take home, and a piñata to whack.  It was a great party, worth all the hours of prep Nicole spent.

Lily ordered her siblings to dress up nice for her party.  Might be time for a new tie for Paul.  But he is the cutest gardener of all time.

Lily got invited for a sleepover at her friend Liana's house as a birthday present, and also got to go roller skating in the morning.  She definitely loves these big events and made Paul and Elise want to have a sleepover too.  Maybe this summer with Oma and Opa.  

Another pause for cuteness.  Lots of bike riding this month with good weather.

And last but not least for May milestones, Nicole closed out the month by swimming in a 2000 meter (aka 1.2 miles, aka 44 laps in a pool) open water swim at Hagg Lake with about 200 other swimmers.  Picture a giant school of piranhas in a feeding frenzy and that's about what the start of the race looks like.  She had put a lot of hours in at the pool the past few months as the plantar fascia is still nixing tennis, so it was fun to see it pay off on a hot sunny day at the same lake where we did our first Triathlon eight (gulp) years ago.  I'm really proud of her.  The kids were super impressed with mama and were great cheerleaders too.

Ok, one last blast of cuteness.  

April

Ear infections can bite me.  April ended up being a bit annoying with all of us fighting something especially ear infections at some point.  Poor Paul.  He got his first ear infection in the US after way too many of them his first 2 years in Munich.  He makes us very aware just how painful it is.  Elise just tells us her ear hurts, requests the sweet tasting medicine sometimes, and goes back to playing. 

Oma and Opa left us right after Easter and we miss them dearly as do all Oma's plants missing water....I kid I kid Mom.  They are all still alive. Glad we got to enjoy all of Oma's special treats and Easter decorations and Opa teaching the kids how to prepare the old tradition of eating Biegansky deviled eggs before they left.

Another family member that left us was my first friend in Portland, my cat Gigi.  I met her March 4, 2001 and I'm really glad she is in some of my most vivid memories from these past 15 years.  Enjoy all the grass, trees to climb, deli ham, and cereal milk to your heart's content now. 

Lily is still busy drawing and she is really into drawing fast and making books. We spend so many afternoons at Wallace Park after school and I watch her climb trees, make picnics with friends, make bird nests, play fairies, roll down hills, chase friends around,  and ride her bike around the school.  She doesn't ask me to play anymore - she's too busy with her friends.  I've been surprised by the drama that has already begun amongst the Kindergarten girls - feeling left out and saying hurtful things. I didn't expect to have my 5 year old come home crying over crap like this already.

Elise is my defiant one.  I have lost sight of her at the park way more than I'd like with how she just wanders off without a care in the world no matter how often I've told her to tell me first before she goes somewhere else.  She also easily has more timeouts than the other kids for not doing what I ask her to do and blatantly continuing the act while looking at me (I envision her middle finger extended too if she knew what it was).  She is crazy independent, strong in every way,  wonderfully proud of her special foot (which is so awesome), and pretty darn quirky.  She'll zone out and be in her own world playing with her food or whatever while a group of kids plays a game near her or the rest of the family chats away.  She does give me the most kisses, mwah.

Paul is my needy one.  I have made it no secret that he was a very difficult baby and continues to challenge me at times that drain me so completely that I need a bit of time to bounce back.  BUT he has also turned into this hilarious, super communicator, very perceptive, even empathetic, rule following big boy.  One moment he'll throw a fit that I didn't walk down 2 flights of stairs to hold his hand to walk up the stairs with him and the next moment, he's singing doe a deer at the top of his lungs and telling Elise how important it is to share and take turns because it's the right thing to do.  He is not a big fan of kissing on the lips these days and the only way I get my kisses is cutting a deal with him that he'll kiss me whenever he picks his nose and tries to eat it.  I'm getting my share.

Anyway, all is good.  May - bring it.  

Easter joy.

 Opa teaching us the fine art of eating deviled eggs - Opa style.  "Turn the yolk clockwise slowly"

 Lily all geared up for Run for the Arts.  Love that she sported a headband.

Some of Lily's art.  Easily a better bike than what I can draw.

 Having fun singing.

 Lily got introduced to our neighborhood Bishops for her hair cut.  Took a while before she agreed to it but a late night (830 on a school night - gasp) adventure did the trick.

 Lily's new hair

Of all the things Lily could've written about first day back after Spring Break, this is what she wrote about.  Too funny.

 Paul and Elise love Sushi Train

 Lily really enjoying Vietnamese food

The last picture I snapped of Gigi a few months ago.