We miss you Lolo

One of the things I said in my speech to my sister at her wedding in June was how good she is at always putting family first.  She lived those words last weekend yet again by surprising us at our door for a 4 day visit.  Instead of flying home from her 2 week London/Paris honeymoon with her husband, she sent Ken home and flew to us to finish her trip in a very "not honeymoon" style by spending time with us.  Lolo - we miss you and loved every moment we had with you.  Thank you thank you thank you.  

Paul and Elise LOVE their Aunt Lolo.

We love to just walk randomly rain or shine so plopped Lily in a stroller for a change and got some good bonding time in.

 Checked out downtown street fest and we all tried the unicycle.  Notice Nate had the emergency rescue crew directly behind him. :)

 Anything motorized on 2 wheels is a big deal in our house - MOMO's.

 After Kindergarten stop at the nearest bakery.  Lily knows how to pick out the biggest pastry and yes, she can eat the whole thing by herself.

 Lolo making a Kindergarten drop off run with us.

Getaway with Oma and Opa to the Alps at Millinghof Farm

Because of a destination tip from a friend of a friend - a friend made briefly at the hospital during Elise's stay - combined with always enjoying my time in different places within Austria over the years, I booked a getaway for us at a farm hotel in the Austrian Alps.  I wanted us to get away to enjoy the final days of summer as well as Lily's last vacation days from Kindergarten.  Oma and Opa deciding to join was icing on the cake and simply awesome.  The tip proved to be true, the farm hotel rocked and wow, crazy affordable.

I'll let the pictures speak for themselves.  Meals may not have been relaxing, adult conversation may have been rare, and we adults may not have been able to do much of what we would really want to do but like Nate says, be bummed and then just get up and enjoy what we can do and we sure did.  Thanks Oma and Opa for joining us.  We loved sharing this adventure with you.

Leogang, Austria September 2013 with Oma and Opa

Visiting Oma and Opa

Driving up the hill towards Oma and Opa's house past the vineyards on either side of the road, turning down the street to pass the always perfectly trimmed hedges by Opa, and then turning into the parking spot against one of the many blackberry bushes across from their front door, we arrived for what might be our last summer visit to Oma and Opa's house.  After 20 years in Heidelberg, Oma and Opa have a goal of moving permanently to Chicago sometime in the first half of 2014.   They have built such a beautiful home and community of friends that if I have a tough time thinking about their move, I can't even imagine how gut wrenching and heart breaking it must be for them to say goodbye.  We made sure to make this visit memorable.  

Watching Oma and Opa with my kids is easily one of my favorite things especially when I see how comfortable all the kids are with them from the moment we arrive.  A great perk of seeing them so regularly.  Oma is always thinking and making sure everyone is taken care of from food to toys to activity ideas.  Oma doesn't get as much sleep when we're around, not because of kids waking her, but her mind is always on, thinking about what else she can do to either help us or make the visit even better.  Opa, 75 year old Opa, always says he can't do this or that with one of them because of some ailment but he always ends up going down slides, driving race cars, jumping on trampolines, and climbing up big indoor jungle gyms.  The pictures in the album show that, also the video in the album which cracked me up.  Thanks Oma and Opa.  

August 2013 Visit to Oma and Opa

Another Macrodactyly Post-Surgery Update

Well it's been almost a month since Elise's surgery.  It really doesn't seem that long ago to me, but of course a lot has happened.  A couple of days after the last update, just over two weeks after the surgery, she was given the ok to resume normal activity.  Walking, running, jumping, anything goes.  And she took it to heart.  A few days before that she was able to start doing a bit of walking, and it was really great to see that within about 10 seconds back on her feet she was off and walking around as if nothing had happened.  And now she's back to doing everything she was before the operation.

She's also out of her bandage, wearing a prescription, custom-made class 1 compression sock pretty much all the time.  We picked it up Friday and just like her first steps with the bandage, she took a couple of cautious steps feeling the difference and then was off again.  The bandage was also the last hurdle before seeing what our new footwear situation would be.  So we left the orthopedic shop and headed straight for a shoe store.  Our only pause was to show P & E the Marienplatz glockenspiel figures dancing their 11AM dance.  To our joy, we found that Elise was able to fit into off the shelf shoes.  The front of her affected foot is definitely still thick with extra tissue, but we found a few pairs of shoes she could fit into.  The foot is a (European) size larger than the other, but at least for now we can get shoes at any old place.  Elise is now the proud owner of a pair of covered-toe sandals and a sweet pair of pink and brown high-tops.

One last thing from the past couple of weeks... I was able to visit with another family affected by macrodactyly and it was great.  I've been covering for an Israeli colleague and have been there a couple of times in the past month, and we connected through the blog with an Israeli family with a daughter who has basically exactly the same manifestation of the condition.  In my latest trip to Israel I was able to meet up with the family for a nice visit.  She's a number of years older and has had two surgeries, so it was great to trade notes and share stories with them.  Since there are only a relative handful of people with this condition world wide, it was a very special treat to be able to meet someone else affected by macrodactyly.  I really hope the girls can get together some day.

Now a few pics and videos...

The before and after of her foot (the previous post describes what was done during the surgery).  The biggest thing I noticed was how her other toes suddenly seemed much bigger.

She was so excited after shoe shopping she wanted to dance in her new kicks.

Elise's First Macrodactyly Surgery

Our 1.5 year old Elise was born with macrodactyly of her right foot.  Her first and 2nd toes are significantly larger than the rest of her foot.  There is also a lot more tissue on the sole of her foot near the 2 affected toes making her foot thicker as well. The 2 toes grow at a faster pace and are growing upwards, making it impossible for normal footwear and potential functional problems down the road. We did a lot of research and either corresponded and/or visited doctors in Chicago, Boston, Portland, Cincinnati, NYC, Italy, Zurich, Hamburg, Aschau, and several in Munich. Timing and course of treatment recommendations did vary but not to the extent that anyone said outright that any of the options were wrong. Sure, we wanted one foolproof right way based on lots of data and it caused stress to know it wouldn't be that "easy."

Due to expertise and experience, family logistics ease, insurance, and near term availability, we decided to go with Dr. Giunta in Munich.  We also very much liked Dr. Habenicht in Hamburg who has the most experience with this rare condition in children but relocating to Hamburg for a week and finding time on his schedule within just a few months wasn't going to happen.  I would easily call Dr. Habenicht the Godfather of treating this condition within Europe.  We got lucky, very lucky, that it worked out for both Dr. Giunta and Dr. Habenicht to perform the surgery together in Munich.  The intent was for academic sharing and we got lucky to time the surgery during his visit here, still pinching myself that it really worked out.  I am eternally grateful to Dr. Habenicht for really going out of his way to help Elise.  And to Dr. Giunta for coming up with the idea in the first place.

Elise's surgery was July 12 and consisted of several procedures: 1. Ray resection of the 2nd toe, 2. Tip amputation of the big toe, 3. Growth plate destruction in the big toe, 4. loosen tendon in big toe to help it lie flat and not bend upwards, 5. Debulking of as much tissue as they could to thin out the foot without affecting circulation.  They did everything they said they would and the recovery has been as they predicted as well.  Elise was put under general anesthesia for 3.5 hours.  She stayed in the hospital for 4 days.  Elise does not wear a cast, only a big bandage.  For the last 2 weeks, she was not allowed to put any weight on her foot which ended up being easier to manage than expected.  She took to crawling quickly enough.  She took very little pain medication, only ibuprofen the first few nights at home.  I only heard her complain of pain once and that was pretty soon after the surgery.  She is starting to walk a little bit now but still has to take it easy.  She isn't running laps with Paul around the dining room table.

It was recommended for Elise to wear a Class 1 Compression sock essentially all the time for a couple of years to hopefully help slow the continued growth of the foot. Parts of the foot will continue to grow at a faster rate until she reaches puberty which means she may need additional surgeries throughout her childhood.  We just don't know how many, it may be one more, it may be several.

Elise is handling the whole thing amazingly well.   Kids truly are resilient, heal so fast, and are braver and stronger than we might think a lot of the time.  I'm really proud of Elise.  I'll always remember Elise giving me a hug and kiss while looking at me right before I handed her off to go into surgery.  I'll also remember speed walking 1/4 mile down Lindwurm Strasse (think Burnside Portland folks) in my pajamas carrying Elise to the operating room due to miscommunication from staff regarding which building the surgery would take place in.  I'll also remember riding the ambulance back from one hospital building to the other with Elise and having her wake up crying and throwing up all over me right as we got back into our room where our new roommates were sitting just a few feet away having a pre-surgery discussion with the anesthesiologist.  After 3 hospital stays in Munich sharing the room with at least one person, I just couldn't get used to it and felt very uncomfortable each time.  Minutes later, Nate paid extra to get us into a private room for the rest of the stay and it helped. Worth every cent.

As for pictures, I will take my first picture of her new foot this week which I will post.  If you are interested in seeing her old foot and how it grew over time and how she still walked and jumped with it, let me know.  Here are few recent pics from the whole ordeal.

As for the rest of the family, Paul knows Elise has an "aua" and will crawl with Elise from time to time while playing which is sweet to see.  Lily was sweet letting Elise take her favorite doll Aya to the hospital, a doll she has never shared.  And she's still confident Lily, the other day when I asked her who the smartest person she knew was, she proclaimed "ME!"  Oma and Opa came to help hold down the fort and made the logistics much easier.  We are all grateful to have this done with and Elise to be in no pain.  We have our struggles.  Not being able to go outside much because Elise's foot can't be in the sun and heat is tough.  Paul always demanding a lot of attention and not being able to get as much resulting in SO.MUCH.CRYING wears us down.  Like way too often, life feels so hard when we compare it to pre-twins time.  It's all about attitude and perspective.  I get it.  It's just really tiring to find at times.


She stayed in the hospital the night before the operation.  This was right after Elise fell asleep.

 Her special foot right before going into surgery.  19 months old

Day 1. Holding her for first time right after surgery.  She was throwing up from the anesthesia and still very tired.

 Day 2. IV still in but able to eat again without throwing up and acting quite normal.

 Day 3. Fun with Daddy in hospital room.

 Day 4. About to go home.

Staying Busy and Preparing for Elise's Operation

With our world about to change for a little while due to Elise's first operation and recovery later this week, we have made sure to stay busy and enjoy some of the beautiful Munich summer weather we finally have here.  Keep Elise in your thoughts and prayers please.  And if you have any advice to help me stay calm and to keep my emotions in check when I need to, please help.

Kids wanted to eat a weekday breakfast at the little table for a change.

Dad and Lily riding to a playground through Englischer Garten

Felt like a typical German family on Sunday.  Hiked to a beer garden at Tegernsee.  Too bad this is the best family pic we could manage.  

Hey Blue Eyes

Cool new open field right behind Marienplatz.  It was an archeological site for a couple years.

P and E listening to classical music during lunch at Hofgarten, always on Mondays.

Snapshot

After all the travel recently, I wanted to stop and do a snapshot of our little monsters.  Our focus for the next several weeks is on Elise's first surgery on July 12.  I'm nervous and emotional; I welcomed all the travel and business recently to help keep my mind off "it."  I want to be so strong to set a good example but I suck at it; I am shedding too many tears to feel strong.  Anyway, I know it will all be ok and for whatever reason, this is the path we are supposed to travel.

So, I'll start with Elise, our head full of corkscrew curled hair 1.5 year old Elise.   We often find Elise cuddling her baby doll and taking her for walks around the house. She'll always look back to say "bye" and blow us a kiss.  She said "jacke (jacket)" the other day for her first German word which makes sense with how much she likes to put on extra clothes and go outside.  She seems to really enjoy the eating experience in her high chair testing out different combinations, feeling her food, and then eating it with such delight.  She loves to play with Lily's toys, especially Barbies, but will get super frustrated now when she can't do something which does usually happen in Lily's room.  Gosh, overall I would describe Elise as super smiley sweet, happy, and independent.

 

Paul makes a lot of noise.  Paul says momma more times in an hour than Elise says in a week.  Crying, yelling, and random sound effects are the norm and in that order.  He's super active running around with this light on his feet prance/march style, playing with balls, and pushing race cars around. He's not a big fan of sitting in the stroller and prefers to help me push it while walking along side it with one hand on the side bar.  He loves books and lately will bring me a German singing book to me to sing over and over again.  He continues to amaze me with how he applies what he observes when it comes to picking up and cleaning.  He's crazy about helping with the wash, dishwasher, putting away clothes, wiping the table, vacuuming, and even picking up cat puke.  I want to crack the code on why he cries so much after waking up from naps and is usually so whiny/grumpy but I might have to that's how he is.  He does make me laugh a lot even if it's when he continues to stuff his face with way too much banana every morning.  No one is going to take your banana buddy.

Paul will still cry whenever he gets his face and hands wiped after a meal which is why I particularly enjoyed this little show he gave me after eating a pretend meal.  Couldn't embed this video, not sure why, so here's the link.

Paul wiping his face

4 year old Lily is busy slaying dragons, having sword fights with witches, and chasing pretend snakes.  My trip alone with her to Chicago was much more fun than I expected.  She can be helpful, dare I say mature, and fun even when she's sleep deprived.  Give her an audience and she's good.  Didn't expect her to take the microphone at Sonya's wedding and give a speech to everyone....by saying "I love Lolo (Sonya's nickname)." And I mean fun as in entertaining conversations, not just "why why why" and being silly and sweet.  We've never slept in the same bed and she loved falling asleep with me and then waking me up with a kiss.  She is still all about riding her bike and it's a constant battle to bring her confidence down and have her realize that some of the situations we are in riding around Munich are dangerous.  She still prefers to play alone instead of with Paul or Elise but is showing more signs of wanting to try some stuff out with them like chase.  She can be super sweet with them when she's not busy taking toys away from them.  She really likes to order her own food, pay, collect change, and keep the receipt.  We have introduced the concept of earning money and she's quite excited about earning money for clearing the table or doing pick up in any room besides her own.  Who knew 20 cents for a room could bring such joy?

And just a few more random recent shots.