Sunday, July 27, 2014


We took the kids bowling this weekend while Mat's parents were here visiting.

Enjoy the pictures!

Cainan had a great time - he was really into it.
 Finley had great form!

 Gramma and Pappy watching
 Finley said she would feel the vibration when the ball would be coming:

Thursday, July 24, 2014

On taking kids on vacation

When I was growing up - my parents took my brother and I on vacation every summer.  We traveled most of the United States during various summers - sometimes being gone 3 weeks at a time.  I was lucky because my parents were teachers, so we had a lot of freedom to travel when the weather was nice.

As a child, I never full appreciated how lucky I was that I got to travel like this.  We have been to New York City for Broadway shows more times than I can count.  We traveled by car across the United States and back (give my dad a map and a van, and that man can take you anywhere).  We visited the beach.  We visited New England.  We went to Canada to see the falls.  We took two Carnival Cruises and went to the Bahamas.

My parents found it very important that we get out of our small town and see as much as we could.  Granted, we didn't start taking more "historical trips" until I was around 10, but we always went somewhere.   The country is so big, each area very different and with its own unique treasures.  We weren't wealthy, by any stretch of the means, but my parents sacrificed other things so that my brother and I could do what they felt was more important than say.....expensive jewelry or a fancy car.

So it is no surprise that I (and Mat as well) felt it important to get the kids out to see more than the towns we were living in.  Mat and I have lived in 6 states - so we have had the pleasure to meet people from different parts of the country.  Pennsylvania, Maryland, California, Florida, Connecticut, Massachusetts - the people from all of these states are all so different.  We have our favorites......and our least favorites.  But we would have never known if we hadn't experienced it.

Mat and I traveled across the country when we moved to California.  It was one of the best trips we ever took.  (even though Mat accidentally deleted all the photos I took).  When Arlington was born - our travel didn't stop.  We flew her to Pennsylvania several times to visit family.  We took her on a trip up the coast of California before we moved away making it all the way to San Francisco and back.  And then, before she was even two years old - we drove back across the country to our new home in Florida - stopping every 3-4 hours in a new town, and experiencing a new site.  (we even took her to Arlington, Texas - her name sake).

After Finley and Cainan came along, we didn't travel as much.  We did fly back and forth to Pennsylvania, and hit up Disneyworld 3-4 times a year, but with two kids in diapers, I wasn't as eager to go far from home.  BUT - before Finley and Cainan were 2, we found out we were moving to Connecticut, so we decided to brave a car trip vacation to make the move.  We took two weeks up the coast, and we had a blast.  The kids did great, and Arlington - now old enough to really understand some of the things we were seeing - was eager to learn everything.

Now that they are older, trips are more in the front of our mind.  They are old enough to dress, bathe, eat all alone.  Last year we tried our first historical trip and took them to Philadelphia.  It went really well, and the kids soaked up the history and enjoyed asking questions.  I was pleasantly surprised how easy it was to engage them in something I thought they might find "boring" or over their heads.  I didn't give them enough credit.

So this summer - with Finley's diminishing vision, we decided to take out the big guns and take them overseas.  We debated taking a trip here in the United States, but in the end - Paris one.  We were busy every minute of every day - lots of museums, old statues, history......and they took it all in.  I never once heard them complain that they were bored.  I never saw them not engaged in what the tour guide was saying.  Again - surprised by how much they learned.  Kids are little sponges.

Next summer we will tackle Washington DC.  And then maybe International again the following year.  As they get older, our trips around the country will be longer, and probably by car, like they were when I was a kid.  As they gain stamina, we will broaden what we see.

I am not saying you have to take long trips, or expensive trips.  It starts by leaving your little bubble.  Taking them to the big city near where you live.  Take them to a play, or a musical.  Or take them to a museum - many around the country are free for children, so if in 1 hour they are touching the painting and setting off the alarms - you can leave without the guilt.

Drive to a nearby town and eat lunch there.  I can't think of one state that doesn't have something beautiful or interesting to see.  Go beyond the amusement parks, and the beach.  Go outside your comfort zone.

The world is big.  And time is short.  We know that as we look at what is happening to Finley.  You may feel like you have a lifetime to get there, or that this isn't the right time because.......whatever.

I want to give my kids what my parents gave to me.  I am grateful in a lot of ways that Mat's profession had us move around the country because I have friends from all over.

So start making that bucket list.  And take your family along for the ride.

Sunday, July 20, 2014

New Blonde

A few weeks ago, Mat and Arlington came home from a shopping trip with some blonde hair dye.  Arlington said it was summer and she wanted to dye her hair blonde.

So today my mom - the hair dye expert - helped her dye it.  She was so excited about it.  I guess I am glad that it wasn't purple.

Wednesday, July 16, 2014

Vacation bloopers

Now that we are home - I thought it would be fun to share some things that always happen when the Pletchers go on vacation.

We didn't have too many - which was kind of shocking -  but we had a few.

The first night in our London apartment - Arlington pulled the curtain rod down when she slipped getting into the shower.  She grabbed for the shower curtain and the whole thing came crashing down.  Luckily we were able to repair it.

Cainan and I got lost in Notting Hill.  We were looking at a store while Mat and the girls went off to buy something.  I started after him to see if I could catch up with him, but somehow we lost each other and spent a good 20 minutes before I located them.  That is what happens when you only have one working cell phone internationally folks.

Cainan thew up on the car ride from the London apartment to the train station before we left for Paris.  It was a really bumpy car ride with lots of stopping and starting, so we should have known it was coming.  I gave him something for car sickness before we left, but it didn't work.  Not only did he throw up all over himself, he threw up all over the car seats.  Luckily I had a roll of toilet paper in the suit case, and I was able to clean him up (and the seat) fairly well and we had our luggage, so I was able to change him.  But it was crazy.  We gave the driver 30 extra Pounds for his troubles.

Cainan broke a glass at one of the restaurants.  Apparently, they don't believe in plastic wear here in Europe for kids.  We always had either wine glasses or regular glasses, and he just bumped one and off it went.  He started to cry and the waiter brought him a bowl of ice cream to make him feel better, but we left a big tip because of it.  It hit the cobble stone ground and just shattered.

Cainan spilled a glass of orange juice all over the table and himself.  (poor Cainan he is getting a bad rap here - and he is the good one!)   It was an accident - he was reaching across to get a fork and over it went.

Our bank card never did work.  We have two (thank goodness) different banks, and one was fine, but our long term bank - NOPE.  I had set it up before we left, talked to them about being gone overseas, got everything we needed......except the new pin number.  We assumed it would be the SAME pin number we have always had - for the 10 years we have had the card - but card, new pin.  Sigh.  And when we CALLED them to find out what it was - they couldn't tell us over the phone - it could only come by mail.  Super helpful when we of town.  Luckily we had our other bank card AND we had taken out money before we left the US - so we were fine.  But what a pain.

Mat and I got separated in the subway station in Paris.  One of his subway passes had been giving him some trouble, and he couldn't get through.  So he had to go and find another entrance to buy a new ticket.  He told us to meet him and what I heard was "on the platform".  We had to exit and re-enter, but we ended up on a different platform.  It wasn't a big deal - I knew where we were going - but he wasn't there.  So we assumed he had gone back to the apartment thinking that is what we had done - so we got on the subway and went home.  Nope - he wasn't there.  He was still searching for us back where we got on!  Poor guy was frantic.  But I never saw him - it was really crowded.  But all was well, and I was pretty proud that I got myself and the three kids back to the apartment alone.

Arlington got a big scratch on her head when she walked into a sign she didn't see.

I got a huge bruise and bump on my forehead when I hit myself with the camera taking it off from around my neck one of the days.  We were hurrying and it just wacked me right in the head.  Still hurts today and it happened probably 5 days ago.

Finley got stuck in countless bathrooms.  She had a hard time figuring out the locks, and I would spend several minutes on the other side talking her through it.  After awhile, I started just going in with her because I couldn't take it any more.

Finley closed the handle of her little rolling suitcase right on her arm and pinched her skin and it left a mark.  That wasn't pretty.

I actually think that is it!  Not bad for us.  We didn't lose any kids, we didn't lose any luggage or important papers, and my green binder was GENIUS.  Genius, people. :)

RDH12 Gene and Lebers Congenital Amaurosis (RDH12)

The other day, someone found out blog by searching for LCA and RDH12.  They reached out with a comment wanting more information - but did not leave a way for us to contact them.

This post is for them - in case they return.

We would love to hear from you!  We have a very active foundation for RDH12 research.  We are working with Dr. Thompson at the University of Michigan and Dr. Ali at the Moorfields in London.  We are the only group at this time that is exclusively funding RDH12 research.  We have been a foundation since 2010, and have raised over 1 million dollars for RDH12 research.  We are looking at being at the FDA later this year and in clinical trial by the end of 2015.

If you would like to learn more about us, you can check our foundation page at or email us at

Please reach out.  Research is moving fast.  Right now we have 19 families and 16 children with RDH12 as part of our group.  We are close knit and have learned a lot from each other.  We are a support group above all else.

We hope to hear form you soon!


Tuesday, July 15, 2014

Day 11 - Sherlock Holmes house and Platform 9 3/4 and then Home to Massachusetts

I didn't have internet connection Monday in the hotel we were in, so I am behind a day!

Anyway - Monday morning we left Paris and went back to London for one more day.  We were catching our plane out of London today, so we decided to have one more day there in case there was anything else we wanted to see there.

We got to the train station a bit early, but glad we did.  They were having technical problems with the ques and customs, so the line was HUGE and not moving.  But our train left on time, which was great.

We didn't make a plan ahead of time - wanted to make sure there wasn't something we missed the first time around.  We decided to check out the Sherlock Holmes house/museum since we only had a few hours to spare.

The museum was neat.  It was at 221b Baker Street - for real - and was pretty cool.  We had to wait in line for an hour or more, but we did fine.  We got some snacks, and took turns leaving the line to stroll the shops near by.

After the house, we went to Kings Cross station, and saw Platform 9 3/4 (for all of you Harry Potter fans).  It was right there between platforms 9 and 10!  There was a HUGE line of people who waited to take their picture with the cart going into the wall, but we passed on that.  I had just wanted to see it.

We ended up eating at the station because everyone was hungry and Arlington was OVER IT when it came to trying new foods.  So we gave in and ate burritos.  A total let down, but we dragged the kids to many cafes and restaurants and made them try new things, so it was okay.

We spent the night in a nice little hotel and this morning we left for Massachusetts.  Our trip to Heathrow was LONG - over an hour in a car with a driver, but we just were riding along.  Traffic was crazy.  We got to the airport and check in was also crazy.  A lot of people couldn't figure out the kiosk to scan their passports and get their tickets before going to the luggage check in gate, and so the luggage people were having to do all of that as well at their desk.

We checked in the luggage and got some snacks for the plane and breakfast foods.  We headed to the gate (which was FAR) just to find out they changed it just moments before to a gate much, much further.  By the time we got to the gate, they were boarding.  We have never been that close before and we had been in the airport for 2 hours.

Flight was great and actually went by quickly.  Kids all did very well, and we were in the house by mid-afternoon.  We are all messed up - think is midnight, but we are hanging on just a little longer so we can right ourselves.

Tomorrow is back to the grind.  Mat back to work.  It is hard when a vacation comes to an end.  I now have the travel bug to see more.  The world is so big, and I have been letting my fear of flying hold me back.  This was the first time I have flown and not felt that fear.  I hope in a few years, Mat and I can make another trip like this one.  We will have to see where the kids want to go next!

Enjoy the pictures.

Arlington and Finley at the train station.
 Paris' Train station
 This is the eye hospital where our researcher, Dr. Ali, works:

 Sherlock's house at 221b Baker Street:

 The line to get into Sherlock's house:
 Finley and Cainan pose with the policeman outside of Sherlock's house:
 Inside the house:

 Mat sitting at Sherlock's desk signing the guest book:

 The home and work place of HG Wells - which was right down the street:
 Kings Cross station:
 Platform 9 3/4!!!!

 Crazy people waiting in line to take their picture with the station:

 Eating Burritos.  Sigh:

Sunday, July 13, 2014

Day 10 - Arc de Triomphe, Place de la Concorde, Champs Elysees, and Père Lachaise Cemetery

Today is our last day in Paris.  SOB!  How did it go by so fast?  I feel like we were just boarding the plane in Massachusetts, and now we are wrapping up our vacation.  Tomorrow we head back to London for one last day and then head home on Tuesday.  Sigh.......

Today we took a casual approach.  I had planned a few things today but left the afternoon open to chance in case while we were here we found something we REALLY wanted to do.  I wanted to make sure we had an afternoon for that "oh - we should do that" kind of activity.

But the weather got in our way a bit.  We thought about going to the catacombs, but they are not open when it rains (because it is under the ground).  Plus we found the wait to get in could exceed 2 hours (you can't get tickets ahead of time).  So that didn't work out.  So we settled on the cemetery.

Our first stop was at the Place de la Concorde.  This square has quite the history.  It was designed in 1755 and was originally named Place Louis XV.  During the revolution it was renamed Place de la Revolution and a guillotine was put in the square.  Many important people were guillotined on this square including King Louis the 16th and Marie Antionette and many others.  AND during the "Reign of Terror" in 1794, 1300 people were guillotined in one MONTH.

Nice place.

Today a fountain is in place of the guillotine.  We couldn't walk around the square much because they are setting up for the Tour de France.  (that crazy race is causing us grief all over the place).  The square is where the end of the race will take place.

AND it was POURING.  Just raining so hard.  We thought it might last all day, but it only lasted about an hour and then let up.

After the Concorde, we walked down the famous Champs Elysees.  (Shawns day la zay - is the best way I can think to write it out in English for pronounciation).  Stores and stores of famous brands and just huge shops and cafes.  We ended up eating at a cafe along this road after strolling for awhile.  The kids had fun walking around and going into some of the more unique stores.  We even visited Louis Vuitton (where we saw a $28,000 purse) and the kids didn't touch anything which was a miracle.

After our walk, we made it to the Arc de Triomphe.  The road is set up as Concorde as one side of the Champs Elysees, and the Arc on the other.  It is a nice walk - about 0.5 of a mile - and not bad at all because we are busy looking at the shops.

The Arc was huge.  Even though we had driven by it on several bus tours, to stand in front of it was something else.  We didn't climb to the top because the line was long (and you couldn't get tickets ahead of time) and with the foggy weather, and just being on the Eiffel Tower a few days ago, we decided it wasn't worth it.  So we spent the time walking around the Arc itself.  The Arc honors those who fought in the French Revolutionary and Napoleonic wars.  All the names of the wars and officers are on the walls.  There is also a Tomb of the Unknown Soldier there.

And - of course - it was commission by Napoleon in 1806.  (A big "him" is carved on the arch).    It was not completed while Napoleon was Emperor, but was completed by the time his body was brought back to France to be buried here.

After the Arc we decided that the weather was nice enough to head to the Pere Lachaise Cemetery.  A lot of famous people are buried here, and Mat thought it would be neat.  Arlington quickly vetoed going to a cemetery, but she lost the vote, so off we went.

It is the biggest cemetery in Paris and holds the remains of famous people such as Chopin, Jim Morrison, Theodore Gericault, Balzac, Oscar Wilde, on and on.

Right as we were finishing our tour of the cemetery, the skies opened up and a thunderstorm started.  Arlington thought that was perfect since we were in a "creepy place".  So we headed for home.  It was after 5pm at this time, and the kids still wanted to get a few souveniers.  We did a little trinket shopping, went to a bakery for dinner goods and treats, got poured on again (thank goodness we have umbrellas) and headed back to the apartment.  This evening we are packing up because our train leaves tomorrow around lunch time to head back to London.

So our time in Paris is over.  We really did enjoy it here and I know someday we will return.  Mat and I would like to do some traveling without the kids to eat maybe a little more "freely" than we can with them in tow.  But the kids have been great and tell us they are having a good time.

Here are the pictures from today - enjoy!

This is the fountain on the Concorde:
For my parents - these are the stands on the concorde they are setting up for the race finale:
 Champs Elysees is all dressed up for the race. 
 The yellow you see on the right under the flags - those are rows and rows (and rows) of stands all down the street)

 Eiffel Tower inside the Disney Store:
 Champs Elysees!!

 Cainan's new car.  He said he wanted red:

 I had no idea Mercedes sold more than just cars.  They have shoes, suit cases, purses, sunglasses, nail polish (which was 40 Euros).....lots of stuff.  
 Arc de Triomphe:

 The Champs Elysees from the Arc:

 The Tomb of the Unknown Solider:
 It says:  Here Rests a Soldier who died for the Motherland.
 I took a picture of this store because Mat loves the color orange:

 In the Toyota store on the Champs Elysees:
 Took these for my Father in Law, Ben:

 Kids could color a car picture and then hang it up in the store:

 Finley's is on the bottom there:
 We may have bought a little treat for my mother in law in this store.....
 For my mother - she likes pictures of food.  Mat had a type of Lasanga for lunch that had salmon in it and on top:
 Today I had a pizza type meal with locks (fresh salmon) and different cheese.  It was very good:
 Entrance to the Pere Lachaise Cemetery:

 A lot of the older grave sites have these small buildings:

 These are the remains of Heloise and Abelard - history's most passionate and true love story.  The story is long, so if you want to read about it - you should visit this website here:  Abelard and Heloise.  This could lived around 1046 AD.  They were moved here 600 years after their death by Josephine Bonepart (Napoleon's first wife).

 Jim Morrison's Grave.

 Weird gum tree next to his grave.  I can't find out why it is there - most just say it is a colorful tribute to the singer:
 A massive amount of graves in this place:

 this is Theodore Gericault's grave.  He is famous for painting the Raft of the Medusa which hangs (and we saw) in the Louvre.  That Raft is a crazy true story where a raft carrying 157 French Navy Men who were lost at sea after their ship sunk and by the time they were rescued 13 days later, only 15 had survived.  On his grave site is a copper reproduction of this painting.
 This is Chopin's (the famous composer) gravesite:
 This is a crazy cat her made herself comfortable in a flower pot on a grave:
 This was a cool one.  If you can't tell - it is a giant camera in there.  On on the right hand wall is one of those little QR codes you could scan with your phone:

 General Gobert - we thought this was an interesting statue.  His name is on the Arc De Triomphe.  This statue shows him being shot in the head and dying in battle.
 This is Joachim Murat who was the Brother in Law of Napoleon:
 Grave of Oscar Wilde:
 If you look on the right side - you see the kisses people put on the grave site:
 Balzac's grave:
 This is the cute little elevator in our apartment.  It can only hold like 2 people.  We usually just walk up, but the kids wanted me to take a picture of it:

 Who will feed me like this when we go home?!?!