Part II

The weather is definately a challenge: walking out of the hotel this morning we were met by SNOW! Well, indeed a fresh start of the day! We went to the Rockefeller University Hospital at the Out Patient Clinic, and were met by the very kind staff. Dr. Arleen Auerbach came to meet us a little later, and we had a good talk and chance to ask a lot of questions regarding the research project. Then Dr. Boulad came by, and we discussed a whole range of issues concerning FA and transplantation. Both doctors were very patient with our many questions, and we got a great deal of very useful information from the consultation. Sebastian was VERY shy and alert throughout the talks, and when we finally came to the blooddraw he gave an example of his hysterically scare of this exercise. So much so that Dr. Auerbach suggested lunch-break after his serious cry out. Great idea! We went for lunch and Sebastian was fine and cheerful quickly after leaving the clinic. We went back an hour later and finished up the paper-work and gave a bloodsample (Tue and I) as well. 

The afternoon was used for napping - everyone was exhausted from the visit - and we did not go out again until 6 in the evening. The cold weather shortened the trip and having walked along a windy and very cold 3rd Avenue for a while, without having found any suitable dinner option, we just went back to the hotel and ordered some take-away 'Italian' food. This evening and the coming weeks will most probably be used to mentally evaluate the visit, as the whole FA journey is indeed a complicated and challenging one.

Tomorrow we are going on the Staten Island ferry despite the weather and probably walk around Soho and Greenwich Village. If Sebastian wakes up as early as the past few days, we will be the first in line for the early ferry ;-

Meeting our neighbours - on Fifth!

It sure is a small world! Walking around on the corner of Fifth Avenue and 34th Street we suddenly bump into our neighbourgs from back home in Copenhagen! What a great surprise! Mette and Steen, and their three kids, are living and working in Chicago for half a year, and had gone to Manhatten for the Easter holidays. We went to have a coffee and it was great to hear their news. The reason why we went to 34th Street was to go up in the Empire State Building, but the queue was WAY too long. Instead we walked up to the Grand Central Station, to see the hall and some trains. Tue spotted the Oyster bar very quickly, and a visit has been scheduled for one of the coming days!

We then walked towards the Rockefeller Center as the queue was much shorter than at Empire State Building (yes, the Rockefeller is not as tall, but sure tall enough for us!). And you have a great view of the Empire State building from the Rockefeller tower. We had a little lunch at the Rockefeller Plaza where Sebastian took a great interest in the ice-skaters. Then a little shopping on Fifth Avenue (kids clothes and toys) before heading home for a nap. We went to Jackson Hole right across the street for a burger and are now fairly stuffed and ready for bed!

View from the Rockefeller Center

First night at the hotel

Manhatten

We have arrived here at Manhatten, all three of us, all our luggage and only 'slightly' tired! Although Copenhagen airport was Easter packed with people we managed to make an unstressfull check-in, even leaving time for a nice cup of coffee with Lotte, who was so sweet to help us out to the airport. Thank you! We strolled around a little in the airport and made it out to the plane. It all seemed a little abstract for Sebastian, looking out on the airplanes, until he finally stood face to face with our vessel. Then he wanted to board strait away, and he was in the best of moods when we found our seats. In the check-in area he had seemed a little tired, and this would play fine into our little master-plan: to get him to nap on the way over - not least to'shorten' the 7 ½ hours of flight. But NO, Mr. Sebastian had no intensions WHAT SO EVER to lay down and relax/sleep. He was jumpy and playful for the whole trip! His hearing aid did not fit the airplane movie-system, and we were greatful that we took his little movie-screen with us on the plane. The batteries ran out at some point however (2½ movies), and we managed to read and play until we finally hit the ground in Newark.

 
He must have found the trip amazingly fascinating as he even made it through immigration, customs and luggage pickup until he finally fell asleep (Copenhagen time: 21:30) in the arms of Tue in the taxi driving us to our hotel on East 64th Street. 

We are well installed in a nice, quiet suite with everything we need. We went to the grocery store 'The Food Emporium' right around the corner and bought some fruit, milk, bread and cheese. So we will survive until tomorrow ;-) where we all hope to be a little more up and awake! 

Ready to leave

The bags are packed and we are - more than - ready to go on our US trip! We are leaving tomorrow morning and will hopefully reach New York some time tomorrow afternoon. We are all looking forward, very much, to this trip - not least Sebastian who is insisting to go by space-rocket rather than airplane! We cross our fingers for a safe journey!

Friday we went to the 'growth-doctor' for weight and height control. Sebastian is growing at a very fine speed, and he seems to tolerate the growth hormones well. It has been a great relief to start on the growth treatment, and it seems to have given Sebastian renewed energy and even muscles! In May we are going to look into some bladder-issue, as Sebastian might have a small atresia in his urethra. We hope that it is something harmless, and right now it does not seem to bother him.

Sebastian is very much into pirate-stuff. He dresses up like a dangerous pirate every morning with hat, claw and sword and even changes his voice down into something very dark. Knowing that leaving his pirate-dress behind will NOT be an option, we are planning to pack down his pirate-stuff into the suitcase, hoping that if customs decides to open it, they will not arrest the bunch of us!

We will try to update as often as possible during the coming weeks and wish you all a nice and peaceful Easter.