Update on Bee's Birth Defect

This is taken of the x-ray with my cell phone but if you look where the dot is that will show you where the divide is. The dot is a metal bead placed on her skin to show the radiologist where to look.

After much crying and gnashing of teeth about Bee's birth defect I set out to find the best doctor to take care of my gal. I scoured the internet, pleaded on facebook for advice and visited a local doctor in town to get a gauge (see how well that went here)

On the advice of a pilot friend of James' I started looking into the different Shriners Hospitals near us. We don't have one in Arizona unfortunately but there are ones located in LA and Salt Lake City. LA is the easiest for us to get to so I called them up to see if we fit the criteria to be treated there. I was thrilled to find out we did and I immediately filled out an application.

While waiting on that I had emailed a doctor out of the Boston Children's Hospital after calling there and finding out they had treated someone with similar defects there. I never really expected to hear back since I had many, many, many unreturned phone calls and emails to doctors/their assistants. Much to my delight he emailed me back and offered to review Bee's case. I'm over the moon that he will review it and extend some advice our way without us traveling to Boston. The x-rays are going to be sent to him tomorrow for his review.

After about 10 days I called Shriners to make sure they got our paperwork (AKA stalk someone for a status.) I was thrilled to talk to the patient coordinator and find out they had accepted her. Apparently my not checking the mail.... like ever....lead to me not getting the paperwork yet. Opps. I rushed home and opened the letter. We have our first telemedicine appointment with the LA Shriners doctor this month. I was super excited that for our first consult appointment that we could do it without travel. Traveling with a 10 month old is scary to me. Apparently they bring children from the southwest and Mexico to Tucson to do these evals through telemedicine first (so google tells me.) I'm not exactly sure how it will all play out but we're excited to see what they have to say. The x-rays have already been sent their way so the doctor can review them before our appointment.

My biggest hope is the the Shriners doctor and our Boston Children's doctor will have the same treatment plan recommendations. We would have to sell my kidney to have the surgery in Boston even with insurance so I'm hoping we feel confident with the Shriner's doctor.

For my own sanity I will be sans pink hair, wearing a sweater set and with my husband at our telemedicine appointment. I might even make him wear his flight suit. I'm only half kidding on that one. I'm super glad that James is working a night shift that day because he's gotta keep a lid on my crazy at our appointment. I'm happy to have movement and hopefully a timeline for treatment after the next month!

Just for kicks- here are the girls ready to head out to work and Nana's!