Last Friday went well. Edward and I got up super early and drove five hours and rolled into our appointment. They took xrays and Dr. Mosca told us that Edward needs to have a pretty rare surgery called a talectomy...they remove his talus bone. Then we drove home. Sweet long hours in the car.
Surgery, as of now, is scheduled for March 1st. This will be a pretty involved surgery, his biggest yet.
I took this video of my boys....you need to watch it to the end. Pretty typical of brothers/siblings or youngest to oldest behavior. It gave me validation with my siblings. hahaha
http://vimeo.com/36496621
I found your blog through a Google search for Freeman-Sheldon. Someone suggested that my 6 month old might have it, so I was trying to do some research on it. Some of the pictures of your son look a LOT like my son. It's uncanny! So, now I'm really interested in this syndrome, wondering if that's what Corban has. If you get a chance, please email me at marvelouslight at hotmail dot com. I would love to hear from you!!
ReplyDeleteAlso, I hope you don't mind me being nosy, but I noticed you are considering a talectomy. I don't know all the circumstances, but I would encourage you to get a second opinion first. A friend of mine had that done on her daughter and now she regrets it. Her feet are nearly impossible to work with now. If you would like my friend's name/number or if you'd like my doctor's contact info, I'm sure he'd be happy to give you a 2nd opinion! Just email me if you're interested. :)
Awww. . I watched the videos of your little ones. The one of Edward laughing is adorable!! So sweet.
ReplyDeleteHi. My name is Laura, I'm twenty years old, and live in San Jose, CA. I had a baby boy on February 20th. He was immediately put into the NICU and was determined he has FSS. Over the past two days I've been reading your blog and have found incredible strength and hope. When I read your entries it feels as if I wrote them myself. Anyways, I would really appreciate if you emailed me at gogogolaura@gmail.com
ReplyDeleteNo matter how much support I have it doesn't compare to someones own personal experience. I look forward to hearing from you. Edward is in my prayers everyday. God Bless <3