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.