The first month or so we were at the Dr. every other day basically. Or so it seemed. We were either with Dr. Wolfe, who we decided to stay with her throughout this even though she wasn't suppose to be their pediatrician. Otherwise we were making the hour and a half trip up to Marquette. Our first appt. with the surgeon was on April 24. He didn't tell us much other than we could expect her to have surgery between 6 to 12 months. It would all depend on how she was thriving and breathing. He didn't really have much to say and it seemed like a wasted effort.
May 6th we headed to Green Bay, WI to see the pediatric eye Dr. Throughout all of this they had brought up some concern about a condition called Stickler Syndrome. After the more I learned about this and heard about this I realized all it was is a name. I could deal with another name I guess, as long as it didn't mean something else horrible in all of this.
The Eye Dr. did let us know that typically when a child has stickler syndrome they are very nearsighted, and Sylvia is actually completely opposite and is a little farsighted. Which is typical in babies.
We headed to Marquette again in June to see the clinical geneticist. They would draw her blood and then perform extensive tests to determine whether or not she has any of the three forms of stickler. We are still awaiting these results.
They had asked me all sorts of questions to see if they could diagnose this as genetic or not. As of right now it seems to be the way she was positioning between 12 to 16 weeks. They sent us to the lab for a blood draw which was an absolute nightmare. They tried three different veins and failed each time. The reason was supposedly because she is so thin. She screamed like I have never heard her scream before. They ended up taking blood from her artery in her wrist.
To reward her for her braveness, mama went and got her ears pierced. I know, shame on me! :)
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