Vascular Birthmarks Foundation Forum - View Single Post - Surprises come in little packages
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Old 06-25-2010, 02:52 PM
abatie abatie is offline
Senior Member
Join Date: Oct 2009
Posts: 240

Becca is doing pretty well. We are going back to Mayo on July 30 and then we will probably know a little more. She is also seeing a local ENT about her hearing before we go back to get a little more information to give to her team of doctors at Mayo to try to make some decisions about hearing. She will have a new chest x-ray and will then see cardiology, audiology, and dermatology at Mayo. We were not able to get appointments with the PM&R or the pediatrician. We are also still struggling with trying to find a PM&R closer to home that works with children and will be in network. Our insurance company has been very difficult through all of this and the worst part is that our insurance is through the hospital system that competes with the hospital system in South Dakota that provides the vast majority of children's services. For us it has been a huge headache because there is a children's hospital about four hours from our home that could possibly provide some services but we can't utilize them. Our insurance is more than happy to send us nine hours (one way) for services at Mayo. Mayo is great and we love our doctors there but for some of Becca's care it would be nice to be closer to home. I never realized how frustrating medical issues that are rare can be to families until I had to deal with it. I have friends that have had children go through huge medical issues but they were things that were common and that doctors knew how to treat and they just knew what to do with their kids. It hasn't been like that at all for Becca. I feel like I educate most of her doctors.
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