Saturday, January 3, 2009

Happy New Year! I hope this year is a bit easier on us. We had a wonderful time in Vermont. I started a job at a fine dining restaurant in Downtown Boston called Marliave. I am working 5 nights, so have been a little busy adjusting to my new schedule. My mom was also able to visit which was very nice. The kids really enjoyed her, and we were able to show her around the city. She wasn't here long enough. It sure was nice to have an extra person around.
John had a metabolic appointment this week. The doctor was also a genetic specialists, and seemed to be quite intersted in John. He does not believe that John has a metabolic disorder, but does believe that he possibly has a genetic deletion. After spending a little time with him he believed that John has FG syndrome! John has not been tested for this so we did another genetic test. It will take 6-8 weeks to get the results back for this. So a year later with very little answers we are awaiting another genetic test. I am not going to get too involved in this until the results come back. It does sound like a possibility, but we will see. I have had a lot of possibilities, but nothing that has been able to diagnose John.
We did come back from our Christmas vacation to a very generous gift. Our friends at Coldwell Banker Bighorn Realty in Crested Butte had a fundraiser for us at the annual Christmas party and sent us a very nice present. THANK YOU SO MUCH!!! It was so nice to be able to get caught up on some bills, and to know that our family in CB is still thinking about us. It means so much to us.
We hope everyone has a wonderful New Year. John has a visit with his pulmonary specialist this week. I am anxious to see how his lungs are looking on another chest x-ray.

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