Paul and Elise are 4.

Paul and Elise are now 4.  Their age is one of few things that are similar about them.  Paul and Elise continue to be so wonderfully different from each other.  

Elise is tough, silly, and independent. I don't mean tough like a bruiser (none of my kids are bruisers) but she is an easy patient when she's sick and wins almost all fights against Paul. She is also very gentle and sweet with real babies and her dolls.  She says she wants to be a doctor when she grows up.  She's damn good at drawing, coloring, and writing letters because she's interested and does it a lot these days.  She is always last out of the house, out of the car, upstairs to clean up, ready for bed, etc.  It's her power move and it's so frustrating when I'm in a rush but I get it.  She will watch Lily intently in her gymnastics class and copy her every move.  Elise loves dress up in any fancy dress, ballet, or gymnastics outfit and will dance all around.  She gets very much into her own world in the playroom and doesn't need to be with anyone for long chunks of time.  She does love to play cheerleader to Paul though.  Whenever I'm playing a sport with Paul, Elise likes to cheer him on and tell him he'll win the trophy cup.  Elise gave herself an extreme haircut the other week because she said her hair was in her face. Bye curls.  Elise continues to be an amazing hugger (time.stop.please), cracks herself and Paul up a lot with her nonsense silly talk.  It chokes me up thinking about what my Elise has to still endure with her foot/leg condition but she's tough and I'll stay strong even if my eyes are watering right now.  

Paul by far continues to be my biggest helper.  Just the other day - Paul was already downstairs with shoes on,  I was about to be, Lily was midway up the stairs and Elise was still upstairs.  I asked Elise to turn off the lights about a foot away from her and she said no.  Lily said no because she said she claimed she was too far away.  I was ready to start (more like stomp) up the stairs when Paul says "I'll do it" and ran up without even being asked.  That's my buddy.  Paul is a big singer, especially in church.  He is the worst eater by a landslide.  He is a rule follower and very observant and good at remembering details.   His preschool teachers told me that Paul is very emotionally mature and handles social situations really well.  I did laugh in their face when I heard it but after I stopped and thought about it, I can kinda see it.  He lets his guard down with me but his game is on at preschool and I'm so proud of him.  He is incredibly easy to talk to and so fun to watch with his expressions when he's on and the back and forth with him are some of my favorite moments ever (time.stop.please.stop).  It chokes me up just thinking about how far he's come and we've come together.  He is starting to tease like Opa, try out jokes, loves playing games, and rough housing with his sisters. He is still very much into sports, riding his bike, and was as happy as can be playing at the beach in Mexico.  

I'm a proud mom.  It amazes me how I can be so in love with the good moments and then want to run far away from the screaming and the whining and the yelling the next.  Our house is still such a loud house and doing simple things like getting in the car or having a meal together is rarely civilized and smooth.  We have big girl/big boy voice sticker charts and dinner rule charts and often counting to 3 for a consequence and I say stop so much each day and I repeat myself but the good moments...the facial expression from Paul when he shrugs his shoulders and tilts his head and says "yeah. sure.  no problem." and when Elise is sleeping surrounded by a pile of books in her own made fort on the floor or telling me that she wants to replace the batteries in my face after I die...the good moments are o so damn good.  I just need to remind myself more that the good moments in a sea of messy moments and mistakes and mini regrets is ok. It really is.

Morning of their Birthday after being surprised with balloons

Cute pic from their Birthday party

Birthday party cake time

Funny video of Paul getting some help from his buddy Benji blowing it his candles at the bday party.  If you listen closely, you can hear Benji's twin sister telling him to help Paul out.  Too cute.

November

The tragic news headlines from the last few weeks connected to terrorist attacks and gun violence has shaken me. Shaken me in the way I sit by the window of a restaurant and get both choked up thinking about the innocent victims and scared by anyone catching me off guard walking by the window.  I hug my kids tighter before I say goodbye to them in the morning because I'm a bit scared.   I am reading more news stories than I've ever had trying to make sense of it when all it does is the opposite.  I read the ways I can help make my voice heard yet still feel helpless.  We're no closer to being in a country that can figure out how to prevent gun violence and give us a greater chance of feeling safer again - damn it!  I will continue to live in my small world doing my best to raise my kids to be smart and ambassadors of good.  I would like them to look back and say their childhood was full of love and that they felt safe.  I hope they become adults in a world where they feel like they can make an impact for the better, and that they have the perspective to keep this crazy world in check and not let it get to them.  I am personally struggling with that right now.  

Anyway, the love was definitely in our house in November.  We had a few minor hiccups - a 2nd lice outbreak, a broken washer,  and Elise cutting her own hair (bye bye curls) - that kept us on our toes.  Oma and Opa left for Chicago for the rest of the year.  It'll be just us in Portland this year for the Holidays and it'll be our 2nd Christmas in the Beast.  Looking forward to it.  

Zoo lights - thanks Intel

Decorating Gingerbread cookies with Oma and Lolo

Loved having our good friend from Munich, Tamara, visiting with Paul's look-a-like E.  

Silly Elise on Thanksgiving Day

Bedtime story time with Oma and Opa

Paul getting treated for lice at Lice Knowing You Spa.  

 Elise prefers to create her own forts and sleep on the floor.  

Won't Forget October Any Time Soon

It started as a normal, standard month.  Nothing too exciting.  Good weather for October, fun in the park and visits with friends.  Nicole took the kids to the coast for a fun overnight with friends while I stayed home to plow through exterior house maintenance.  Then we had a week-long vacation to Puerto Vallarta, Mexico.  We stayed at a nice all-inclusive beachfront resort with two other friend families, hung by the pool and on the beach, took a boat to a private cove, held a monkey, stuffed our faces with fresh guacamole and drank cervezas as we wished.  More on the fantastic-ness that was the first six days later.  Because about 48 hours before we were scheduled to leave we heard there was a storm that just got upgraded to hurricane status that might be heading in our general direction.

We didn't think much of it at the moment, as we were about to head for dinner.  And as we strolled back from dinner we chatted with the other couples that we should check the forecast, noting that the hotel staff was busy taking in all the pool chairs.  And umbrellas.  And everything else that was physically moveable.  Hmm.  As soon as we got the kids to bed and popped the laptop open we quickly got scared.  Very quickly.  We saw words like "potentially catastrophic" and "on track to be a category 5".  We came up to speed on all things hurricane and waited anxiously through the night for the NOAA reports and projections.  We packed and planned and, frankly, panicked.  Nicole didn't sleep, I managed to convince myself that I needed rest for whatever came the next day and managed three hours or so.  We were about as scared as you can get without completely losing it.

I'll speed up, otherwise this will be the longest blog post ever.  In the AM we huddled with friends.  We tried to get a taxi driver to take us all to Guadalajara.  Couldn't make it happen.  We heard all the highways were shutting down at 1PM.  We kept watching the NOAA updates.  Hurricane Patricia, category 5.  Off the scale.  Winds >200 mph.  Lowest air pressure ever recorded.  Potential for massive storm surge. Catastrophic flooding.  We were just about out of options, we were hunkering down at our hotel.  Our friends did manage a supply run to Walmart to grab as much food and water as we could.  One thing that I hope sticks with me is the hotel staff.  It seemed like they were all there, no grim faces, just going way, way above and beyond.  I felt really guilty about that, why weren't they taking care of business with their families?  We heard that some of their families joined us in the hotel ballroom that day, but I didn't see any evidence of that.

We made a last ditch taxi ride a couple of kilometers inland to check out another evacuation spot, but the director there recommended we stay at the hotel as in his opinion it was safer and better equipped.      So we hunkered with about 700 new friends in the ballroom.  There was three days of food and drink stocked, but people were not exactly conserving food when meals were served.  Our amazing families had been busy all day making calls, arranging rental cars, alternate flights, notifying the State Department of exactly where we were.  We continued devouring and dissecting every NOAA update.  The projections were getting a bit better for us, moving from around 60% chance of hurricane strength winds to about 50% to about 40%.  As the eye got closer to land it became clear that the forecasted path would hold and the eye would pass to our East.  Our biggest potential threat to life, storm surge, seemed unlikely to put water in our ballroom haven.  That is probably the mental fear image which will stick with me - picturing water coming into the ballroom.  The afternoon wore on, our worst fears subsided, we started breathing a bit easier.  By mid-evening the big danger had passed and we were released back to our rooms.  We heard lots of rain through the night.  But when we woke up Saturday morning we were unbelievably relieved to find that there was no damage, no flooding.  Puerto Vallarta was completely spared.  The airport was up and running.  We caught our normal scheduled flight home.  48 hours after the nightmare began we were at home in our beds.  In the end we were incredibly lucky.  I read a few news reports afterward that talked about how the storm turned out to be all bark and no bite.  If the eye had hit a population center or resort area the news would have been very different.  Thank God.

Ok.  Back to those first six days.  Amazing.  In the shuttle service from home to the airport we reflected that this was our first trip with no stroller and no car seats.  And it did feel like the trip was a turning point.  The kids played in the pool for hours without fighting or being bored, they (mostly) loved playing on the beach and Lily even hopped on a boogie board for a few little waves.  She got to snorkel, go zip lining and ride a donkey on a day trip to Las Caletas while the twins rode on a stand up paddle board with Nicole and me.  Paul had a monkey on his head.  Nicole and I got to boogie board in nice size waves.  Lots of frozen margaritas and daiquiris and kiddie cocktails to keep cool in the constant 90+ damp heat.  Paul got quite a tan.  Elise and I got a bit burnt.  We had a great time.  We'd do it again.  Next time we'll just keep a close eye on tropical storm activity and have a backup plan ready to put into action.

Most of October was great weather for biking the kids to and from school.

 Stop at Camp 18 on the way to weekend at Seaside Oregon

 Seaside Oregon beach was a bit different from Puerto Vallarta beach one week later

 Paul was a beach bum - couldn't get enough of playing in the waves.

 Elise had no problem lounging pool side

 Sammy and Lily Boogie Boarding

 Las Caletas - Private Cove.  Day Trip with Vallarta Adventures.

 Happy Paul

 Snorkeling adventure

 Look - there's a monkey on Lily's head

 Paddleboarding fun

Lily having the time of her life zip-lining with her friends.

September

Now I feel like we're living the standard family life, summer vacation and then back to school and fall routines.  School actually started for Lily back in late August, just a few days after we got home from our vacation in Sunriver Nicole mentioned last time we wrote.  The twins had to wait a week and a half for the usual post-Labor Day start of preschool, but now everyone is back and adjusted to the routines of the school year.

It's been a big jump for Lily from kindergarten to first grade.  Homework, spelling tests, and as she put it, less time to do whatever they want in class.  She was very anxious about homework and about first grade in general, but once she understood that it just picked up where kindergarten left off, and that the homework is the same stuff they're learning, she got with the program.  She seems to be a pretty good student so far, not having too much of a hard time but starting to flub a few of the spelling words as the lists get tailored to test results... do well on the tests and you get harder words week by week.

Paul and Elise are having a grand old time in preschool as they're now in the middle of the pack there age-wise.  Hard to believe they still have another year of preschool after this one, kindergarten feels pretty far in the future.  Paul had an exciting start to the school year as he gouged his head on a table while jogging over to hug mommy goodbye and ended up getting a stitch.  He was back to his usual self by the end of the day and got the stitch taken out earlier this week.  He's enjoying riding his bike more now, though he ended up taking the turn into the driveway a bit too fast and face-planting in the neighbor's bush, coming up with a bloody lip.  I guess he's a stereotypical boy.  Elise is really blossoming into a social butterfly, being quite a chatterbox at school and more and more at home.  She gets really exasperated when she has something to say while someone else happens to be speaking, slowly raising her voice until she's yelling over the top of the other person.

Nicole has been biking with the kids to school every day it's not raining, which has been just about every day so far.  The twins still fit in the trailer and Lily's faster than ever on her bigger bike.  And now that Lily doesn't need to be walked to the classroom door the morning drop off is a bit more streamlined.

I've been heading down to California for a day or two every week for work for quite a while now, meeting up with the team I work with.  Finally managed to do something fun a couple of weeks ago as I took the train up into San Francisco and went to a Giants game.  It had been a long time since I had been to an MLB game, too bad I couldn't catch the Tigers at the A's on one of their West Coast swings.  Maybe next year.  Those trips definitely make me appreciate the lack of sprawl and the relatively tame traffic of Portland, not to mention the proximity of the office to the city... a half hour here vs. an hour plus from San Jose to San Francisco.

Ok, a few (very few for us) pics from the month.  If you just skipped to the pictures, tsk tsk.

Oktoberfest at Mt. Angel.  Not quite the same as the real thing but still fun.

Bagel reward after Paul's stitch.  Looks like he's not quite sure Elise did anything bagel-worthy.  At least she's pretty cute in a 2nd hand flower girl dress.

Costume time can lead to some interesting combinations... babushka + clown?

Fresh picked organic children, headed to market.  Or family weekend at Zig Zag Mountain Farm where we enjoyed some good times with friends and slept in a yurt.  

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.