On this last day of september, which is also craniofacial awareness month, I thought I would share part of our journey. We found out while we were pregnant that Josie would be different, that she would requires surgery, no one surgery but many surgeries. We found out she may have breathing problems, feeding problems, speech problems, vision problems, basically many problems. As you can imagine grief and anger quickly ensued us. We found all this out just before christmas 2005. Actually we knew in september of 2005 something "may" be wrong. So my pregnancy was not a happy one....
Once we turned our attention to the internet to figure out just exactly we were dealing with, we found Apert.org which has been a godsend. We joined the listserve and met many wonderful people that gave us much encouragement before josie was born and even more once she was here. Imagine your child being diagnosed with a RARE craniofacial syndrome (1:160,000 or 1:60,000 depending on what you read), no one has ever heard of it, where would you find the answers? Luckily the internet steared us to Don, Cat & Teeter sears and the rest is history.
We were lucky enough to meet Josie's craniofacial surgeon while she was still in the womb. He is world renouned and better live for at least 15 more years, I would trust her to no other. Even more amazing, he opened the craniofacial clinic at the hospital I work at. His name is Dr. Ian Jackson, along with Dr. Pieper (neurosurgery) they performed josie's first surgery at just 3 months, giving her head a more "normal" shape. But that is getting ahead of things.
We had no idea what to expect when Josie arrived. Because her sutures in ther head were already fused, my doctor had me scheduled for a c-section, since her head would not be able to mold to come out. My OB was a godsend in himself. He was so compassionate and caring and made sure everything was taken care of. To tell you the truth, I think he as a mighty bit scared. You see he is about my age, so I am sure this was a first for him- dealing with the "unkown". Josie arrived February 3, 2006 (Superbowl weekend--detroit was hosting!!), she spent 24 hours in NICU and only 9 hours on oxygen. I did not get to see her for the first 24 hours, which is another long story of complications. Josie's NICU nurse was amazing and called me with updates, and even came to see me (since my temp was low and I was pretty much in shock (medically not mentally) in my room.
This is where I became the expert. You see, since we found out prior to birth (which is rare), we had plenty of time to research, so we had to educate the medical staff at the hospital. And it has been that way ever since, us educating the public, doctors, teachers, strangers & hopefully YOU!
You see we have been pretty darn lucky. Yes, josie has been through 9 surgeries in her short life, but she is doing AWESOME! She is coming into her own and getting a might bit sassy and stuborn (taking after daddy....) We are lucky she is pretty "mild" as we have been told by the many doctors taking care of her. While we do get stares and silly kid questions about her hands/face/eyes, we are lucky that she does not have the major issues. No tracheostomy, no feeding tube, no major vision issues. Of course this is just the beginning of her story. Check back to learn more of what Josie has been up to the last 3 1/2 years!
1 month ago