Thursday, March 10, 2016

Update's been a while since I updated last.  Anniek is doing well these days.  We had more genetics testing done recently and it came back with results that even the doctors are not sure what it means 100% because of how rare her issues are.  Right now we know that she has a duplication in chromosome 3p and a deletion in chromosome 11q (Jacobsen Syndrome)...11q is pretty rare...but for the 3p Anniek is the only one that they know of in the North America and European databases.  I keep saying Anniek is unique and she just keeps showing us how unique she is!  We are doing more genetic testing on her, but some of the tests takes a long time to come back.

Tuesday, June 10, 2014

Time To Head Home

Today we had to get up early and make sure the last of our stuff was packed.  We then had an early breakfast at the hotel.  After breakfast we gave our room one last check for stuff that we missed packing and brought our bags out to the lobby to heck out then wait for the shuttle to bring us to the airport.  I was once again surprised at how far away the airport was from the city.
When we weighed our bags at the check-in we had to take 2 back and rearrange things from one bag to the other to make one light enough and another heavier.  We got through customs no problem and we got the passport stamp for France there.
Disney had a play area for the kids in the waiting area as well as a couple PS3 systems to play.  The wait did not seem very long at all as Anniek was occupied.  We also stopped at the duty free store and got a couple things.  Getting onto the plane was different also.  You go outside to a bus that brings you to the plane, then you go up the stairs outside of the bus and your on the plane.
Once again they upgraded us to the option plus and we got a pair of ear phones, a free comfort kit, the adults got wine and we all got free snacks when they came around.  On the plane Anniek was well behaved and didn't bother with any of the stuff in the bag I had packed again, just like she told me.  Anniek slept, played, watched the movie and kept me from sleeping.  I watched a movie had some wine and a rum and coke as I had a coupon for a free one on the plane, I tried to sleep but Anniek kept bugging me, so I put her in the middle between me and Joanne and got some rest.
When we arrived even though we were in the air for over 7 hours the time was only a couple hours different from the time we left at.  Joann texted my Mom when we landed.  We breezed through customs as there was actually no line!!!  We had to wait longer for the bags then we had to at customs.  We then got through baggage check quickly and without getting stopped.  We called for a shuttle when we got outside and they told us where to catch it and Joann texted my Mom again to let her know that we were waiting for the shuttle, my Mom was shocked we were through customs and the baggage check so quickly.  The car was already waiting for us when we got back to where the car was and we packed up the car and headed back to London.

Monday, June 9, 2014

Eiffel Tower

Today we slept in a bit, but we still got to enjoy our continental breakfast at the hotel in Paris.  When we get to breakfast in the morning there is a wine glass with orange juice and a jar of plain yogurt on the plate and in the middle a plate with 4 different mini jam jars and one honey jar and a basket with some fresh croissants, chocolate croissants and baguettes.  The waiter brings a plate with ham and cheese and you can have either coffee or tea (8 flavors).  The sugar comes in packets of 2 cubes.
After breakfast I got information from the front desk about what metro (subway) to take to go see the Eiffel Tower.

We got to the Eiffel Tower, but looked at where to find our tour group and it was like a block away, so we couldn't make it in time to meet up with them, so Joann called the number on the information sheet and we were able to meet up with the tour group before they went up the tower and go with them.  The guide was very knowledgeable and we got to stay at the half way point of the Eiffel Tower as long as we wanted to when the tour was done and we had the option of going up all the way, we decided not to go up all the way as we were high enough already.
On the way back to where the metro was we each got a cartoon drawing of ourselves by the Eiffel Tower.  Then we went on a 2 level marry-go-round.  We also took pictures by a nice fountain.
 I figured out how to navigate the metro and bring us to a famous street in Paris...Champs-Elysees.  We enjoyed a lunch at a cafe on that street and discussed what to do next.  We then took the metro back to the hotel so we could pack up for the plane tomorrow because we would be getting picked up by the shuttle first thing in the morning.  On the way back to the hotel we stopped at a bakery to get treats for later in the evening.
When we were done packing we went to dinner at a nice restraint that smelled wonderful by the hotel.  I had some french onion soup as well as Anniek, we decided that we like my Dad's french onion soup better.  We also found out what smelled so was escargot and we each tried one of Joann's escargots.
When we were done we stopped back at the hotel to grab our snacks and put milk that we bought at a grocery store into water bottles to drink with our snacks.  We took the metro back to the Eiffel Tower and found a spot to sit and relax and watch the Eiffel Tower and eat our snacks.  We bartered for a LOT of Eiffel Tower key chains...enough for our family and all of Anniek's class.
At about 9:30pm the lights on the Eiffel Tower turned on and at 10:00pm the Eiffel Tower started to twinkle like it does every day starting at 10pm and it lasts for 5 minutes then continues to do it every hour on the hour all night.  We got our pictures and video clips then headed back to the metro and to our hotel. 
 At the hotel we each had a shower before bed as we have a long trip tomorrow.

Sunday, June 8, 2014

Paris Disney!!!

Today we went to Paris Disney!!!  We asked at the hotel where to go to catch the RER.  We found our way to the right spot, but we ended up getting on the wrong train, so we got off and caught the train back the other way and we got back to where we started.  I asked someone where to go as soon as we got off which was a good thing because the train pulled up right where we were that was the correct train.

At Disney we got a card so that Anniek gets to skip the line with 4 companions.  The maps for the park came in every language in Europe.  With the card we were able to do each ride more then once as well as some areas of the park.  Anniek also got to meet Mickey Mouse

and Bell from Beauty and the Beast.

Anniek went on almost every ride except for 2 as she was too short for them.

The longest line we had to wait in was the line for Mexican food at tasted great.
We did not realize that almost all the restaurants close at 8pm so for dinner the only places that were open were the gift shops on Main Street and a hot dog place so we each got a hot dog and found a place to sit and eat them.  We then found a washroom and went to find a place where we could watch the light show after dark.
A family with a couple boys around Anniek's age were in front of us waiting for the light show to start too.  Anniek went up to the younger of the two boys and started talking to him, it was obvious that the boy didn't know English as he looked very confused when Anniek talked.  The big brother then came over who was closer to Anniek's age and started chatting to Anniek very fast in his language.  He even sat down next to her and had a "conversation" with each of them speaking their own language.  They even shared a bottle of water and candy with each other it was cute to watch.
The light show started at 11pm because that is when it was dark enough.  It was AWESOME!!!
When the light show was done we headed quickly back to the RER and made it back just in time as there was a train there, ready to leave any minute.  We got back to the hotel just after midnight and fell asleep easily.

Saturday, June 7, 2014

Train Ride

This morning we went to breakfast at the same place by the hotel that we have been eating at and we got our last Dutch pancake for breakfast, Yum!!!
We also had to go shopping to get a bigger suit case for Joann so that everything fit in the bags.  We then headed back to the hote to reorganize with the new suit case and make sure everything was packed.
We arrived at the train early because we thought that there would be customs, but there wasn't, you just got on and off at your stop even though we were going from The Netherlands to France.

Anniek played with her new Pokemon that she got the other day when we were out checking out the stores.  She was not interested in anything that I packed for her other then the snacks.  We had lunch on the train.  When we arrived in Paris we took a cab to our hotel then dropped off our stuff and checked out the room at the hotel.  It even had a walk out private patio!!!

We then wandered around the hotel area and found this wonderful crape plae where all they serve are crapes so dinner was a buckwheat crape with spinach, cheese, mushrooms and a cooked egg on the top.  Dessert was a crape covered with chocolate, nuts, whipped cream and caramel.

After dinner we went back to our hotel because we wanted to have an early night.
When we got back to the hotel our tickets and RER tickets for Disney that we ordered when we got to the hotel were waiting for us as well as our stuff for the Eiffel tower tour we booked.
We then showered and Anniek fell asleep for an early night.  It didn't work for me though.

Friday, June 6, 2014

Time for the BEACH

Today after breakfast Joann's cousin and her husband came to pick us up and brought us to their place in Ijmuiden.  We sat out on the back patio and Anniek found a paint brush in the shed and got a bucket of water outside and decided to play with it until lunch cleaning things.  Anniek really warmed up to the husband.
After lunch we went to the beach on the North Sea by their place.  At the enterance to the beach there was an area where  an area of sand was dug out and 10 trampolines were placed in it and they rented out each trampoline for 2.50$ Euro for 10 minutes.  Anniek wanted to do it so she was given the money to do it.

We then talked to the water because the tide was out we had to walk a bit.  There were a bunch of jelly fish all over the sand, I am assuming they were dead.  There were also lots of shells on the beach.  The water was too cold for swimming but we went in up to our knees.

We walked along the beach to a cafe on the beach with a large patio that looked out to the ocean and we stopped there for ice cream and something to drink.  Dogs were allowed on the patio and inside and they did not even have to be on a leash!!!
We sat down to enjoy our ice cream.  Anniek wanted to sit on the bench with the pillows so we let her while we were at a table.  Soon Anniek saw a lady with a little Chihuahua dog and asked to pet it.  The lady had Anniek sit next to her and put the dog on Anniek's lap, Anniek loved that. 

After a while Anniek came up to me and asked if she can have another ice cream, turns out the lady with the dog asked her if she wanted done, so Anniek got another ice cream and ate it with the lady and was sharing it with the dog.  When Anniek was done the ice cream we thanked the lady and headed back to the car.  Anniek was lucky and got carried most of the time we were walking on the sand.  We walked back to the car on a path along a canal behind the beach.

We then drove around and we got shown the old bunkers from WWII.  Back then they decided to just cover them with sand and forget about them, now they are in the process of uncovering them and going through them.
We then went back to the house where we met some more of the family and we had a huge wonderful dinner that was wonderful.  Then we got ready to head vack to Amsterdam and the hotel and pack for the train and go to bed.

Thursday, June 5, 2014

Shopping Day

Today in the morning after breakfast we did some shopping in the streets around the hotel for a while, when our hands were full we went and dropped our bags off at the hotel.
We then decided to go on a canal cruise.  Anniek was not really interested in the cruise so we got off a stop early which was almost right outside of the Anne Frank House.

 We grabbed a bite to eat for lunch at a coffee house just up the street because it was lunch time and Anniek was hungry.
When done we went into the line for the Anne Frank House, but it was getting cooler and a bit windy and the line was huge so we decided to come back later, after we got sweaters from the hotel first.
So we walked back to the hotel and found a shopping center on the way back, so we stopped in and looked around.  After the shopping center we saw the Royal Palace and in front of the Royal Palace there were a couple horse and carriage tours.  Anniek wanted to go on one but they cost $35 Euro for 20 minutes, so not worth it, so we didn't do it.
Batman was also there, so I got her picture taken with Batman.

There were also a bunch of pigeons that would come and land on your arms if you put them up beside you.  Anniek LOVED it that the birds came and landed on her arms.

When Anniek got to play with the birds for a good amount of time we went back to our hotel and dripped off the stuff from the shopping center and got our sweaters.
We then walked back to the Anne Frank House.  The line was in the same spot as when we left it earlier.  It was very interesting, but Anniek was not too interested as she didn't understand about it and was trying to just get through each room quickly.
We then wondered the street around the Anne Frank House and stopped at another cheese place and they had cheese that came in different colors.  They had Green cheese (Pesto), Blue cheese (Pesto/Lavender), and Pink (forgot the flavor) Gouda cheese!!! 

Anniek wanted a pack of blue cheese to bring home so we got a pack of it as they package it so it is good out of the fridge for up to 4 weeks and its fine on the plane.
We then headed back to the hotel for dinner and stopped at a Chinese place for dinner.  The food was very good compared to the stuff we have back home.  Joann then took Anniek and found a bakery while I got a break and we met up at the hotel and had some very nice treats before bed.