OMG I am so glad to finally get in touch with someone locally. Hi Nadine and thank you for reading the message boards. I am learning as much as I can about LM and the more I know the better prepared I am for this defect. Yes, Dr. Levitin is a wonderful person and I am forever grateful to him. I never met him in person but he was so instrumental in evaluating my daughters MRI (via FedEx to New York) he was patient to go through his assessment over the phone, AND totally helped us convince our HMP/HPN to get UCLA Ronald Reagan to approve further diagnosis and treatment for my daughter. I am forever grateful to him. This foundation website is a blessing as well. It's comforting to know all the support out there. God Bless.
I live in Summerlin. I will definitely email you directly so perhaps we can chat.
Here's an update for those who are reading/following this message board...
Miley is eleven months and thriving well. Yesterday, we saw her ENT doctor who will be scheduling her largyscopic test for Thursday 6am. Based on the UCLA and Dr. Levitin's recommendation, we want to make sure there is no compression/obstruction in Miley's windpipe area. The results will dictate whether or not we need to proceed with a procedure or not.
Will update soon....hope all goes well...The waiting period is frustrating but we have no choice due to her young age.....nothing can be done at this point but to wait and see for the test results.....