The journey of a little boy with microtia / atresia.
Thursday, February 26, 2009
I found the lost pictures of Robbie that we sent to the insurance company. They are of the right nubby and left ear. Also here is a picture of him goofing around before his 5 minute surgery on Dec 31, 2008. He was suppossed to be practicing his breathing into the mask.
We arrived at Moffet Lodging around 6pm. Got off kinda later then planned. Trip went well other then the fact Robbie kept asking when we were going home and was afraid to use any public restrooms due to the new automatic flushing toilets that scare him. LOL! The room is quite nice for the price and even though its not on the base the side doors to the building lock at night so that makes it feel secure.
At the momment Tom is studying maps for tomorrow and Robbie is playing his DS. We are going to be brave soon and find some dinner somewhere hopefully close.
We are creating this blog to update family, friends, and the curious on the progress of our sons Roberts surgery that is to happen on March 2, 2009.
Robert is our 3rd child and was born in April 2005. He was born with microtia/atresia of the right ear. His microtia is grade III, microtia is smallness of the external ear and atresia is absence of the external ear canal and middle ear. I don't want to get to technical because I will most likely end up confusing myself so if you are curious a good web page is the California Ear Institute at http://www.californiaearinstitute.com/.
When Robert was born and after I was discharged from the hospital with NO information or name for what he had, I immediately went to the Internet and googled my $%@# off. The Internet helped me so much. I found a website explaining the condition, a yahoo support group with other parents with microtia kids, and that was enough to keep me calm for a few years. My husband and I decided to wait it out until Robert was a toddler and then see were technology was.
As soon as Robert turned 3 I was back on it. That is when I really started to understand what the atresia meant. At 3 1/2 I had a CT set up and sent it to the California Ear Institute in Palo Alto for review. He got a very good score and after going to a conference there in October of 2008 we went ahead and booked for the combined surgery for the beginning of the following year. We booked the combined surgery with Dr. Reinisch (microtia) and Dr. Roberson (atresia) and it is done at Waverly Surgery Center in Palo Alto, CA. Both repairs are done together which is something they just started doing in 08. How we choose these doctors was based on the experience., we left the money part out when deciding and will just cross every finger that the insurance company takes some of the burden. Our decision for the combined was based on our family needs, money, jobs, travel, and Robert. This is one 10 hour surgery and still may require others but we will take it one step at a time.
That is basically where we are at now. Nine days and counting until we leave for our journey. Stay Tuned!!!