Update

Well...it'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.

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.

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 good...it 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.

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 lunch...it 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.

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.

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.

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.

Touring Holland

Today we got up bright and early in the morning then went to get tickets for the "Best of Holland" tour which was 2 half day tours made into a full day and you got a discount if you got them together.  The morning tour lasted until about 2pm.
The morning "Countryside" tour consisted of going to de Zaan, the oldest industrial area in the world that has working windmills.  We got to tour Het Jonge Schaap...a cap winder sawmill that still works!!!  The people working in it were wearing wooden shoes.

We even saw a dutch bicycle...how I wish they had ones like this over here...they would be so much easier with kids.  Anniek wanted to take a picture of one.

We then went to the city of Volendam which is a fishing village.  We got to see how Gouda cheese is made and try numerous different flavours.

We then had a lunch break and went to the place the tour guide suggested to eat for lunch.  I tried eel which was surprisingly really good!!!  Anniek wasn't as adventurous and had a personal pizza for lunch.
After lunch we took a 10  minute boat ride on Europe's biggest freshwater lake to the island of Marken and went to a wooden shoe factory and we got to see how they are made.

In the afternoon we went on "The Delft and The Hague" tour.  We got to tour the Delft factory and see them painting Delft and we got to tour the city of Delft. 

We then toured around in the bus the city of Hague.  It was raining by this time which didn't really matter because it was a by bus looking at the old Queens castle that she still lives in...and the new Kings castle...as well as the parliament building, peace palace and different embassies for different countries.

Schiphol

We arrived safely to the Schiphol airport with no issues.  For those of you that know this is in The Netherlands aka Holland.  We made it though no problems and were one of the first ones to grab our bags and make it out of customs and to the spot to wait for a shuttle to the hotel.

Schipol airport is actually about 20-30 minutes from Amsterdam so I was surprised to have to sit for another 30 minutes after we got onto the shuttle to go to the airport.  When we arrived at the hotel we freshened up and got changed then we went to walk around where the hotel was and see what there was to do in the area.

Because of the time change and not getting a lot of sleep the night before on the plane it all caught up to Anniek around supper time just before they served us our plates.  We had to feed her the pancake because she was so tired she could hardly keep her eyes open.

Children's Wish Foundation

Anniek got granted a wish from the Children's Wish Foundation when she was younger, but we decided to wait until she was more stable and old enough to remember the wish trip.  Anniek changed her mind a few times about what the wish would be.  For a while it was a horse, a trip, a few interesting things that were not possible for her to choose for a wish like a sibling, having a Dad (step-dad) that I am married to and is around.  There were also a few destinations mentioned for trips like China, Africa, Florida, Paris and Holland. 
In the end we decided to go on a trip...by plane.  So we got our passports and everything and it really didn't feel real for the longest time.  It really didn't sink in that we were actually going until about a week before the trip and we were getting packed.
We arrived at the airport early as it is an international flight and we have to get through customs and everything.  Then started the long wait sitting around for our flight to be called...we even got to see the plane before ours load and take off as it was still day light off.

Anniek was very good at waiting for our plane to arrive and to be called.

We even got to be the first ones "checked in" at the gate and the first ones on the plane!!!
Anniek's awesome god-mother came with us.

Cardiology

Anniek had her cardiology appointment today.  I thought it wasn't until March 6th so its a good thing they sent out a letter saying it was today.  Anniek was well behaved at the clinic and the doctor is happy with how things are looking.  So the doctor feels comfortable with not seeing her for another 9 months.  I asked that she be signed up for the heart camp here when the registrations come out and they said that they would sign her up.  I think it will be good for her to go and meet other kids with special hearts and have a camp to do in the summer as she won't be able to go to regular camps with her heart.  She is finally old enough to go to the camp this year...I am excited for her to go, but yet I know I will be nervous once it is closer for the time for her to go away to camp.

General Surgery

We had an appointment with general surgery yesterday, it was supposed to be in December but because Anniek was waking me during the night complaining of her g-tube hurting her they were able to move it up to 2 days after I called!  I had a conversation with cardio about the possibility of having the tube removed on the phone, but they said they would talk about it with me after the appointment with general surgery.  Yesterday tge general surgeon came into the room and said he just got off the phone with cardio and they decided that the tube could be removed today!!!
So Anniek took the g-tube out for the last time!!!

Student Of The Month

Anniek's teacher called me this morning to let me know that Anniek was chosen to be student of the month!  When we moved in January Anniek had to switch school and although the old school knew of Anniek's learning disability they didn't put her right on an IEP because we did not have the doctors retort.  Anniek's teacher at the old school also seemed to give up on Anniek when she got sick in the fall. there would also be notes THREE times a week with behavior issues. When Anniek came to the new school her reading level was 2...basically a lower end kindergarten reading level.  When Anniek came to the new school they put her in a class with a teacher that was used to special kids and feeding tubes!!!  He started Anniek on an IEP from the start and has not let her get away with things like the other teacher did at the old school.   When the report came and they set up the IEP they hardly had to change anything they were already doing for her to help in the school.  Her reading level also came up to a level 6 with the help they are giving her.  Everything is just so much better here for Anniek.    The teacher said that Anniek worked very hard to get the award this month and he is proud of her for what she has accomplished in a short period of time...almost makes me wish I moved here sooner.

No Wheels!!!

Anniek has been riding her bike outside since the nice weather came and is constantly taking brakes in what she is doing to ride her bike on the path that she is allowed to go on. she does the loop once out twice then comes back in.  My goal was to have the training wheels off this year as the new place she is able to ride it more. So I had been slowly moving the one training wheel off the ground until it was not touching at all and the other one only touching half the time.  One of the neighbors that has a child the same age as Anniek said that she told her child that if he went 10 sidewalk squares he could get a slushie.  Another child that is Anniek's size was outside yesterday evening and he does not use training wheels so I asked him if Anniek could try riding his bike.  He agreed and I told Anniek if she could ride three bike between trees that she could get a slushie.  She got on the bike and ride father then the tree!!!   After that Anniek asked me to take her training wheels off so I made sure I did tart before she changed her mind.  Here is a picture of Anniek riding with no training wheels.

Left With Questions

Anniek's cardiologist appointment today went well.  We see them again in 6 months, so I was happy about that.  Then I got thinking about the one question that the cardiologist asked for some reason.  The cardiologist asked about how long Anniek was on antibiotics when she was sick last fall and on a PICC line with IV antibiotics for a month.  She said was looking into it more and said that usual treatment from what she has read is usually a year of IV antibiotics so she wants to look into why the Doctors at the time had decided why they felt that Anniek needed them for only a month. What Anniek had in the fall is pretty rare - Post Strep Reactive Arthritis.  It really left me wondering why she mentioned had suddenly realized this.  From what I had read in the little information that is out there about this had said a year.  So I do not know why out of the blue she asked about how long she was on antibiotics for. She also asked if she could go grab one of the other Doctor's students so that she could listen to Anniek's heart and her murmur.

General Surgery

Good News!!!  General Surgery decided that Anniek's G-Tube is not yet in need of being relocated!!!  They would like to see her back in another year to recheck it and see if it needs to be done then and they will see her sooner if she is in pain from the G-Tube.  It really depends how much she grows.  The General surgeon also said that she needs to gain weight (as she is hovering around 40lbs).  He also said that it would be good for her to see Genetics, I told him we are on the wait list to see them and he said that he feels that she might have something genetic just like the GI doctor though.  I am a little bit disappointed that we were not referred to Genetics sooner and am hoping that we get a date soon for Genetics.
After the appointment with General Surgery we walked over to the Canadian Blood Services building as Anniek's grandfather was donating plasma.  She got a big surprise as my brother was also donating too.  So instead of Grampa driving her to school like was planned she wanted her Uncle to drive her to school.  So my Dad moved the car seat over to my brother's car for him (my brother was still donating) so that my brother could bring Anniek to school.  She was VERY pleased about that.

WE MOVED!!!

On Friday we moved to a new place...A bigger place so we have more room to put things.  Anniek went to a respite place that she goes to once a month so I can get a bit of a break, which is really nice as I am a single Mom.  Anniek went to school on Friday, then the moving truck came and picked up all the big things that me and my Dad could not move by ourselves and moved it over to the new place.  After school Anniek went to the respite place for the weekend and she knew that she would come home from the respite place and be at the new place.  So me, my Mom, my Dad, my sister, and Anniek's godmother made sure that Anniek's room was totally set up for when she came home from the respite place.  At the respite place Anniek's buddy was there that totally loves her.  When she came home she was super excited to be at the new place and had to check out EVERYTHING.  Tomorrow we go to the new school and meet Anniek's new teacher and get shown around the school.  Anniek will be taking a Special Transportation bus van to her new school and she is really excited about that.  She also wants to get everything that is left to be put away ASAP so she can get a new kitten as I told her we can get one after we are settled at our new place when we had to put our cat down at the beginning of the month.

GI Appointment

The GI appointment went well.  They looked at her G-Tube and it needs to be moved because it is close to her lungs so it need to relocated.  He also gave me some recipes that are high fiber to help get her off of the PEG as well as gave her a prescription for her regular formula except the formula will now have fiber added to it.  The GI doctor also wanted to do blood work so I asked him if he could run a couple genetic tests at the same time...which is awesome!!!  He also sent off a referral to General Surgery to have her G-Tube relocated.

Rhumatology Appointment

Anniek had an appointment with her rhumatology doctor today.  It went really well and she got discharged from rhumatology but they also gave a referral for physiotherapy to be done at the school to help with her joints and muscles so they don't get tight. 

Holiday Troubles

A few days after Christmas Anniek had pains in her tummy and said it really hurt and I touched it and she was in pain so off to the Emergency room we went because of course it was a weekend. They just felt Anniek's tummy and decided it was nothing and sent her home, the next day (New Years eve) we had to bring her back to the Emergency room as she was no longer keeping food down and her tummy was kind of stiff.  So they did x-rays and she was backed up as much as she could be, they tried to get an IV and couldn't get one so they used her G-tube for 4 hours of PEG and gave her an enema, which didn't work well at all, hardly anything came out.  So they told me to give her PEG 100 mL/hour for 8 hours a day until she did a good poop, then give her 15 mL/meal every day.  They also did a referral to see the GI doctor for her problem.  The next day (January 1st) we once again had to go to the Emergency room and she has a UTI infection.  All I was hoping was that Anniek would not be admitted to the hospital for her Birthday (January 2nd)