On June 18th 2013, our soon to be 5 month old baby girl was diagnosed with Left Coronal Craniosynostosis. We were told she missed the window for having the smaller endoscopic surgery and that she would need a major reconstructive surgery of her skull around one year of age. We were determined to find a doctor who would still do the smaller surgery. This is documentation of our journey in hopes of helping others who are going through the same thing.
Friday, July 5, 2013
Alice Mary's first 4th of July!
So after a very long and nerve racking week...we finally have an update. On Wednesday I called the insurance company pretty much begging them to help me and asked them what I needed to do to get an answer. I got in touch with a case worker and everything was re-faxed to her personally. With the help of Alice's pediatrician and office staff they were able to get them moving on it even more today. Unfortunately they denied us going to see Dr Proctor in Boston, for now, because they said there is a doctor in Washington DC that offers the endoscopic surgery past 3 months of age there. His name is Dr Suresh Magge and he actually trained with Dr Mark Proctor at Boston Children's Hospital. Dr Magge said he wouldn't be able to to say for sure if he will do the procedure until he evaluates her on Monday. If he doesn't want to do the procedure or feels like she is past his personal window for doing the less invasive surgery then we will automatically be approved to see Dr Proctor in Boston. So the good news is that it looks like the endoscopic surgery will be done, but we don't know for sure which Doctor will do it or when it will be done. So... Jason and I will be headed to Maryland on Monday (where Dr Magge's office is) and by Monday evening we hope to have an answer...I suspect that either way Alice will be having this surgery either later this week or early next week...which brings a whole other level of anxiety and worry. Although I am so grateful that she may have the chance to have the less invasive surgery and that there is a way to help her... it is still so very scary and overwhelming...it really is alot for Jason and I to take in. Unlike anything I have ever been through in my life...I am terrified but trying to be strong. Thank you all for your support...