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.