The Long Awaited Physician Survey

Some time back we posted a physician rating survey in preparation for Craniosynostosis Awareness Month. Well, here we are at the end of the month, and I am just now getting to where I have something that I can post. We learned a great deal in this exercise. Most notably, how NOT to do a physician rating survey.

We had over 100 submissions from all around the globe. With very few outliers we were happy to see many high ratings. It seems that there is a high regard for the physicians that are helping our little cranio kids. I had high hopes of taking this data, and creating something beautiful. Sadly, because of the way we asked the questions, this is not the case.

Looking forward, we are already in the works for taking what we have learned, and making something better. We really feel strongly in empowering other cranio families. We know how important the doctors we chose are. It is a decision that is, quite literally, life changing.  However, we must provide something for those that have submitted. Not only as a way to say thanks, but to show the baseline of what we are doing.

About the survey results.

So, below, you will find a link that will allow you to download the scrubbed results. We have taken out the identifiable data, and have combined results into fewer entries. We are not sure if this will help, but it is something. I am certain that we will remove this link in the months to come. Assuredly by the end of this year. But, keep your eyes out for a new survey early next year. One that will be easier for those filling it out, and provide better data on the back end.

Thank you, again, to those of you that filled this survey out. You are helping us create something awesome.

Also, for those that took the Craniofacial Acceptance Month Quiz, thank you. Your results will be out early in October.

Live big, love bigger, and be kind, always.


Get the data here.

    A Follow-up to the Almost Procedure

    On Friday Michael and I took Zoey back to see Dr. Oiticica.  In the meantime he had spoken with an internationally recognized pediatric surgeon in Cincinnati who works on thousands of imperforate anuses every year.  The possibility of not finding the muscle contraction was puzzling to him as well. For some reason Zoey was so excited about everything that day.  She had a lower abdominal x-ray taken in the main hospital before the appointment in the pediatric wing.  The x ray was taken to look at Zoey’s digestive system a little more closely, and also to search for a possible reason behind her lack of muscle stimulation.  Good news: her stool is passing really well and there weren’t any blockages.  I don’t know how many surprises Zoey has given us in her first four months, but today was yet one more.  In addition to the Cranio, Anesthesia, NICU, Pediatric surgery, and Labor & Delivery departments, Zoey is now famous in Radiology as well.  According to the x ray, a portion of her large intestine is situated on top of her liver instead of below it.  Most likely this has already or will eventually cause a hernia.  We are able to wait until she is older for any corrective action as long as she is free of pain and stool blockages.  It is possible that her rectal muscle is located deeper than normal as a result, which would have been why Dr O couldn’t find it last week.

    We have a follow-up to the follow-up appointment on Sept 7th, when Dr. O will insert a catheter through Z’s fistula to monitor her digestive system from the inside.  This will also help us figure out how the fistula is connected to her colon.  I’m not sure if they will give her anesthesia for that.  I’m so glad she won’t be able to remember any of this when she’s older.  One thing I did find out is that I will be able to give her pureed food on schedule.  Complete solids won’t be possible right now, but it will be awhile before she is ready for solids anyway.  As Scarlett said, “I’ll think about that tomorrow.”

    Side note: As I was typing this Zoey started on my lap and is now lying next to me on the couch.  I don’t even know how she got there!  Lately she doesn’t sit still for longer than 2 seconds, even when she’s sleeping.