6 year old Elise's Macrodactyly Update, Right Foot - Surgery #2

My last blog on Elise was last July when we were surprised at our annual visit with our Seattle doctor, Dr. Mosca.  He recommended we seriously consider amputation of her right foot.  He was of the mindset that prosthetic technology has come a long way and that Elise would be done with surgeries on her foot (only 1 leg operation in a few years), she'd have no restrictions on what kind of shoes she wants to wear, and the social acceptance would be easier for others to understand with a prosthetic versus a very different and large looking foot.  Even though our gut reaction was hell no, we knew it had to do with the surprise element.  We respect him and researched the option. 

We also sought a 2nd opinion and traveled to another well-respected and experienced doctor in Boston, Dr Kasser.  Dr. Kasser was not at all in the camp of even considering amputation; he wouldn't even talk to me about it.  He was confident that he could reconstruct her foot to give her at least a few more shoe options without any impact to her functionality.  He did make it clear that future surgeries would be necessary though.  That did not surprise us.

We decided to proceed with Dr. Kasser.  We didn't want to take away the weight bearing sensation Elise has, or to take on the hardships of adjusting to being an amputee, and we simply don't care how  the foot looks as long as it's functional and doesn't cause pain.  If we end up going down the amputation route, we want Elise to have a say when she's older.

Dr. Kasser reconstructed her foot, specifically amputated the rest of her big toe leaving only the metatarsal and did as much debulking (removal of soft tissue) as he could without making a larger incision.  Dr. Kasser did not want to stop the growth of the great toe metatarsal head at this point with the chance it could grow out a little to give the look of a great toe in the future.  We'll need to balance that with keeping the length of all the metatarsals in her foot at relatively similar lengths so that the ball of the foot stays relatively aligned.

Elise had an MRI (with no sedation) and EKG in preparation for the surgery in Portland.  We spent one week in Boston.  Elise was in surgery a half day and spent one night in the hospital.  She was using a wheelchair and walker for 5 weeks. She progressed to a walking boot for almost 2 weeks.  The last step is keeping her foot wrapped with coban (a simple over the counter elastic bandage) compression bandage for 3 months.  So, all in all, it took 7 weeks to get Elise back in normal shoes.

Writing the facts of this whole ordeal is the easy part.  Writing about the emotional side and the results of the surgery is more difficult to articulate.  Simply put, I am disappointed with the result and relieved to be done for a while.   I hoped for more of a difference in the height of her foot to help with shoe fit.   Her shoe options are still very limited.   I was elated after her first surgery because it was so obvious just what an improvement it was.  I couldn't wait to take her shoe shopping, one of the best days ever.  This time around,  I was nervous to take her shoe shopping.  We did find one pair of shoes that I really don't think would have fit prior to surgery.  That was a happy moment.

 I don't regret our decision and I'm relieved there were no complications. I believe we received all the expertise there is from our network of doctors.  I believe Dr. Kasser is fantastic at what he does and did the best that could be done with reconstructing her foot without damaging it. I believe Nate and I worked as hard as we could to make the best decision for Elise. Elise is back in shoes and mobile just like she was before surgery and doing just fine. Why do I feel sad then?  Maybe I just need a little more time to let the proper perspective settle in.  I know deep down Elise will be fine with whatever challenges her right foot and leg will continue to throw at her.  But right now, I worry about what the future holds and I feel a bit defeated because I want to kick macrodactyly's ass and I just can't.  

Here are some pictures from Elise's 2nd surgery journey

Elise has an abnormal heartbeat so an updated EKG was necessary as part of pre-op in Portland.  She also needed an MRI up at OHSU which was 30 minutes in a loud tube while Elise watched Blues Clues with headphones. 

 Pre-Op Day in Boston at Boston Children's Hospital.  Very thorough and professional.  

 Morning of the surgery.  Nate and I wanted the whole family together to truly feel like Team Mather in support of Elise.

 Right before going in for surgery.  

After surgery

 Elise had just thrown up her 3rd time from anesthesia side effects and my brother surprised us at the hospital.  I didn't realize just how crazy much I cherish family support until I saw my brother, sister, and brother-in-law come out to help us.

Dr. Kasser signing Elise's cast.  We flew home 4 days after surgery.

Back home in Portland where Oma and Opa met us having flown back from Chicago early to help us.  Paul was a big helper pushing her wheelchair.

 Elise hopped around the house with her walker with no problems.

Cast change in Portland with our new local doctor, Dr. Katie Fuchs, who was Dr Kasser's resident in Boston just last year.  Meant to be.  What this picture doesn't capture was that a 30 minute cast change turned into over 2 hours of a very distraught (to put it mildly) Elise not wanting to take the cast off.

Before picture

After picture. tip of great toe was amputated.  

Before picture.  Big toe phalanx was growing upward

 After picture.  Thickness is still there but upward angle has been resolved by removing phalanx.

 Before picture of the extra soft tissue.  

 After picture.  You can see the great toe is shorter and a little bit of soft tissue was removed but not as much as we hoped.  Dr. Kasser warned us not to expect too much. 

Elise sporting her new Plae shoes that I don't think would have fit prior to surgery given the upward toe angle.  It's a tight fit but with the removable insole, it works.

End of 2017. Hi 2018.

Hi 2018.  I'm really pulling for you to be a particularly great year.  I'll do my part and stay positive  and not be an ahole.  You just usher in world peace, cures for cancer and dementia, a healthier Planet Earth, and some gun legislation on the side, got it?

In our small world, I'll remember the theme of the last few months of 2017 as really taking it up a notch when it comes to spending time as a family.  Whether it was traveling on Nate's 2 month Sabbatical, all of us traveling to Boston to support Elise during her surgery, me making a conscious effort to not sign the kids up for anything during after school hours, or just being together during our low key Holidays at home, we have spent A LOT of time together.  It's all about balance and I truthfully can't say it's been too much in an overall sense.  Honestly, it's been really nice.   I'm not anxious for them to start school tomorrow is probably a good indicator too. 

Here are a few fun moments from the last few weeks.  

Thanksgiving family walk.  I love this picture because it reminds me of how Paul was such a great helper pushing Elise and keeping her blanket from dragging on the ground, Elise was in good silly spirits getting outside in some much needed fresh air, and Oma got to say "look at the pretty leaves " a lot.  

Still lucked out finding a good looking Christmas Tree even with the Tree shortage headlines this year.

Paul and Elise did a joint 6th Birthday party at home.  They each invited 4 friends, all from school.  Paul still hates cake. Elise could easily eat her entire cake in one sitting.

Isn't December a great month to get a new roof and 6 new skylights?  A one week job has turned into a full month.  Almost done. Fingers crossed.

These are the notes to Santa this year.  This was Lily's first Christmas knowing the truth.  It's pretty entertaining to read if you zoom in.

Christmas Morning.  Lily and Elise are wearing PJ's from Oma.  I had the exact same PJ's.  Great find Oma.

Both Lily and Elise wanted to be Angels at the Family Mass Christmas pageant this year.  

Family Christmas Dinner with Lolo, Ken, Oma and Opa. Thanks for flying out Lolo and Ken!  We loved having you. We missed you Hinsdale. Also, I am very aware of how awful my camera phone pictures are these days.  Is that a good enough reason to get a new phone?  

Family Blind Pilsner Beer Tasting Competition.  12 Pilsners.  Kloster Andechs won.  Bitburger and Breakside Pilsner were the big surprises for not finishing near the top.  

Got a mini white Christmas this year

Nate wanted a full family sushi dinner for his Birthday.  We even got our waitress friend Kim, who just happened to be helping out at that location, who served us the night we got engaged.

 Nate took Lily and Paul skiing.  Paul's first time skiing and he gave a double thumbs up.  

Part 3: Munich

It's already been 6 weeks since our 1 month trip to Italy and Germany.  We knew we'd return to reality adjusting our sails quickly to focus on Elise's foot surgery in Boston in early November.  It's nice to stop and write about a sliver in time that was so special not that long ago.

The most sentimental part of our Sabbatical was spending our final 3 weeks in Munich.  We lived like locals in our old neighborhood…felt like we didn't miss a beat except this time I didn't have a stroller or big diaper bag with me. My love affair with Munich remains strong; it's beauty still takes my breath away. Just running through the English Garden got me verklempt and I really don't enjoy running that much.  Nate and I are not on the same page when it comes to Munich.  I LOVE it.  He likes it. Good thing we both love Portland.

We had a great daily recipe for happiness: 1. Act like a tourist 2. Stop at a playground 3. Spend quality time with friends 4. Eat & drink with a bit more "whatever we want" feel to it. Even with the days of our kids acting o so horrible, overall, it really was all good and I really enjoyed traveling with them.  Wow, I don't think I would have said that even 3 years ago. 

This picture of my Dad collectively sums up the feeling everyone had celebrating my sister's 50th at Oktoberfest.

Birthday Girl with our cousin Steffi and husband Andi.  

 Being back at our favorite kid friendly Beer Garden at Wiener Platz in Haidhausen

 The kids are standing directly under the windows of our old flat.  Nate probably gets annoyed by just how often I say how much I loved this apartment.

 Standing outside the hospital where the twins were born.  I do not miss trying to breastfeed twins while the extended families of the other 2 women sharing a room with me visited.

 Angel of Peace is one of our family's favorite places

 Nate took Lily to Rome for a few days getaway.

Elise had a bad day.  Enjoyed a day trip to Salzburg.  About an hour away by train.

Lily and Johanna with Elise now old enough to join in.

The first playground we went to in Munich when Lily was 1.5.  Here she's hanging with her Kindergarten friend Maria.

Lily and her other bestie Johanna.  Lily's first sleepover was with Johanna at age 4.

Lily's best bud Jonah.  They met at age 2.    Lily went to Jonah's school with him for a day.

Legoland with Tenley 

Elise, Lily, Sunday, and Melina

 Paul and Emmitt

Swinging and hiking in Lenggries.  Munich does it right with the fast regional train system to get you to places like this comfortably, affordable, and fast.

European Vacation 2.5: Tellaro and Como

After Tuscany we made our way back to Munich.  We had wanted to make it to Cinque Terre but it was going to be too time consuming so we went with our Tuscany host's recommendation of Tellaro, which was easy to pop into for a quick visit and lunch before making our way up to Lake Como where we were spending the night midway to Munich. 

Like the Cinque Terre towns, Tellaro is basically built into a cliff down to the water.

Narrow streets slowly leading down to the sea.  The town's symbol is an octopus which you could see on doorknobs, mosaics, etc.  Legend has it that the town used to get pillaged by pirates all the time and they always had a lookout in the church steeple.  One night he fell asleep and pirates were closing in when an octopus climbed out of the sea and up the church tower to ring the bells to defend the town.  The kids ate that one up.

Moods were not the best on this morning... but at least Paul was chipper at this moment.

And less chipper after slipping and getting a wet butt.  

The scenery and views were enough to make us want to come back again to check out Cinque Terre.

We made one more stop on our way back to Munich.  There are so many picturesque lakes and mountainous back drops between northern Italy and Munich so I honestly didn't expect to be blown away.  We had seen so many beautiful towns up to this point with the same ingredients.  If I had to describe Lake Como in one word, it would probably be fancy.  It just had that overall feel exploring the intimate cobble stoned streets of downtown.   A cute airbnb, yummy local dinner, boat ride, and enough time to walk around before and after sunset (with gelato in hand)...it was such a sweet way to end our road trip.  

It was our first time staying in a place that had a see through ceiling where the playroom full of toys was above the dining room.  How cool is that?