Praise God!!! Rose Nacheca finally made it to the United States :) She left Haiti on Friday July 23rd and arrived at the Magic Convention in Chicago on Saturday July 24th! She was able to meet with a Pediatric Dentist and one Pediatric Endocrinologist who took MANY pictures of her to send to geneticists and an internation adoption specialist trained in identifying conditions based on physical characteristics.
They agreed that she definately has some major issue and they are going to help us figure out what it is. This is very great news!!!
She will meet with an endocrinologist tonight who specializes in a very rare and unique disorder, Russell Silver Syndrome. Rose Nacheca has some characteristics of this but not all. This doctor can usually tell just by a physical exam whether or not this is what is wrong or not.
We will head home tomorrow and start a series of doctors appointments for her there!
Update on Michelle: Michelle started her growth hormone therapy last week. She is doing great! She was very concerned about the pen device used to give the growth hormone. Until now all the medication she has been on has been given through regular syringes so this was a new thing for her. After much objection on her part she tried it and really likes the way it works.
Once we get home we will start the Increlex again. We did not want to worry about the blood sugar issues that she deals with while using Increlex while we were traveling.
Thanks so much for all of you who have been praying for our situation. The prayers are definately working. The next step we have to deal with is to get Rose Nacheca's visa extended. The Haitian government was not very generous with the time they gave us with her. Her visa is currently only for 10 days. This is NOT enough to get everything done that we need to do! It took 5 years for us to get an accurate diagnosis for Michelle. But now we are very well connected in the endocrine world and have many doctors on board and ready to help. The senator's office is ready and willing to help us get the visa extended. So keep praying that is as easy as they made it sound!
Thanks again! I am going to go outside and blow bubbles with my two favorite "Magic" girls!
No comments:
Post a Comment