03/09: USA Trip
Hi Everyone,
Well we are back after our trip to America and what a trip it was. It didn't get off to the best of starts after an 8 hour delay at Sydney Airport (yes we were flying Qantas for those interested) but unfortunately there is not much you can do about that. It didn't take long though for Jasmine to make some friends and before you knew it she had people stopping in the aisle and giving her all sorts of things. We were on the plane with a very large contingent of pilgrims from the USA and we want to thank everyone for there prayers and kind words. A big thank you to Kim and Jackie for basically doing everything that Jasmine told them to do.
Our first port of call when the convention started was to meet with the doctor who was a specialist in Russell Silver Syndrome (RSS). This particular syndrome made up a big part of the convention and was the group that we were in along with families of children that were SGA (Small for Gestational Age). Russell Silver Syndrome was the syndrome that Jasmine was originally diagnosed with so there is a similarity between the two. The doctors name is Dr. Madeleine Harbison and she was very interested in Jasmine. She had not seen a child with Mulibrey Nanism before and thanked us for bringing Jasmine all the way to see her. She remarked that she would have diagnosed her RSS if she had originally seen her. Dr. Harbison was also accompanied by a geneticist from France who took a particular interest in Jasmine. She asked us if we could provide her with some DNA so we are trying to get that to her as soon as possible.
The convention was broken up into different genetic disorders with seminars running that related to each specific disorder and also seminars that encompassed topics that were universal to all children and families that were dealing with a child with a disorder. It was very interesting to attend the seminars that were dealing with children that had RSS and were SGA and notice the similarities in there experiences and those we are dealing with.
We also bumped into a family from Melbourne at the convention. It was good to speak to them and as a result we are going to be seeing a new endocrinologist for Jasmine. Hopefully this will be good as it is always good to have a second opinion.
The convention was a big success and we had a lot of fun in the progress. On the Friday and Saturday nights everyone got together to have a bit of fun. On the Friday night was a sports themed dinner where the kids had a chance to have a boogie on the dance floor. It was great to see everyone having a great time. There was a best dressed contest run for all the kids and as you would probably imagine Jasmine won. I don't know if it was so much the costume as the fact that she was getting everyones attention by showing off her dance moves. On Saturday night they ran a bingo night. It was Kim's birthday that night so we went and had dinner and missed a bit of the evening but by the end of the night everyone had won a prize and the kids had fun.
We are moving forward now and trying to put into place the things that we have learn t while away. thank you to everyone who made the trip possible. We can't thank you enough.
Well we are back after our trip to America and what a trip it was. It didn't get off to the best of starts after an 8 hour delay at Sydney Airport (yes we were flying Qantas for those interested) but unfortunately there is not much you can do about that. It didn't take long though for Jasmine to make some friends and before you knew it she had people stopping in the aisle and giving her all sorts of things. We were on the plane with a very large contingent of pilgrims from the USA and we want to thank everyone for there prayers and kind words. A big thank you to Kim and Jackie for basically doing everything that Jasmine told them to do.
Our first port of call when the convention started was to meet with the doctor who was a specialist in Russell Silver Syndrome (RSS). This particular syndrome made up a big part of the convention and was the group that we were in along with families of children that were SGA (Small for Gestational Age). Russell Silver Syndrome was the syndrome that Jasmine was originally diagnosed with so there is a similarity between the two. The doctors name is Dr. Madeleine Harbison and she was very interested in Jasmine. She had not seen a child with Mulibrey Nanism before and thanked us for bringing Jasmine all the way to see her. She remarked that she would have diagnosed her RSS if she had originally seen her. Dr. Harbison was also accompanied by a geneticist from France who took a particular interest in Jasmine. She asked us if we could provide her with some DNA so we are trying to get that to her as soon as possible.
The convention was broken up into different genetic disorders with seminars running that related to each specific disorder and also seminars that encompassed topics that were universal to all children and families that were dealing with a child with a disorder. It was very interesting to attend the seminars that were dealing with children that had RSS and were SGA and notice the similarities in there experiences and those we are dealing with.
We also bumped into a family from Melbourne at the convention. It was good to speak to them and as a result we are going to be seeing a new endocrinologist for Jasmine. Hopefully this will be good as it is always good to have a second opinion.
The convention was a big success and we had a lot of fun in the progress. On the Friday and Saturday nights everyone got together to have a bit of fun. On the Friday night was a sports themed dinner where the kids had a chance to have a boogie on the dance floor. It was great to see everyone having a great time. There was a best dressed contest run for all the kids and as you would probably imagine Jasmine won. I don't know if it was so much the costume as the fact that she was getting everyones attention by showing off her dance moves. On Saturday night they ran a bingo night. It was Kim's birthday that night so we went and had dinner and missed a bit of the evening but by the end of the night everyone had won a prize and the kids had fun.
We are moving forward now and trying to put into place the things that we have learn t while away. thank you to everyone who made the trip possible. We can't thank you enough.
