Friday, May 31, 2013


Over the past 4 weeks, while I've been recovering from major surgery, I've been doing really well. Of course, like everyone else I would still occasionally have my down days, but I started doing a whole bunch of things again. I started heavily on therapies, getting myself prepared to go back to school again, and was doing some amazing things. I decided to invite everyone who has been influential in my life to a gathering at my house where I will start one of the things that I can easily see myself doing for the rest of my life. 
That's irrelevant however. Today I am writing about the challenges I am just beginning to realize. This explains the title of the post. I learned that it seems that any time I leave home things start to get really rough. Even when I am visiting my family - even my entire 22 member family - I still feel lonely. I really don't know how to explain it though because I recognize how wonderful my family is. I just need some connection to home. That or a distraction by some other kids my own age while I'm away. I just cannot handle it when someone blocks me on facebook, someone won't answer my calls, or when I'm going through a meltdown and no one picks up their phone, all while I'm away from home. I just can't handle it. So the reason for the title is that I decided that I just need to stay at home. But then again, really, what is home anymore? I am such a mess.

Saturday, May 4, 2013

Surgery one last time!!!!

This is Shannon's dad.  Shannon asked me to make a quick post to let you know what has transpired in the past few days.  In preparation for what we hope and anticipate will be her final surgery, Bishop Wellman and Bishop Wood came over on Wednesday and gave her a blessing.  This really helped reduce her anxieties associated with the surgery and had her ready to go.  I got back in town from a business trip to California Thursday night, and yesterday, May 3, 2013, Pheobe, Shannon and I woke up early and travelled once again to Primary Children's Medical Center for an early morning surgical appointment with Dr. Siddiqi and Dr. Riva-Cambrin, who were doing Shannon's cranial reconstructive surgery.  The surgery involved removing the plates and screws from the last time, and also removing the tissue expanders that had been inserted about 5 weeks ago, and then inserting three synthetic plates over her existing bone to fill in where the bone had resorbed following the earlier surgeries.  Dr. Siddiqi also cut out the scar tissue from the previous surgeries so that he had fresh tissue to stitch together at the end of the procedure.   This was a bit of a pioneering effort for the doctors.  They had done these implants before but never over such a large area.  A 3D rendering had been made of her skull via a CT Scan which allowed the plate manufacturer to follow the irregular contours of her skull on the underside of the plates so that they would fit perfectly.  Dr. Siddiqi gave us a model of the skull and the plates that was really fascinating to see.

The 6-hour surgery went really well.  Shannon's vital signs remained strong throughout and the surgical team did an outstanding job.  Following the surgery she was sent to the Pediatric Intensive Care Unit (PICU) for the night.  Doctors just made their rounds this morning and are really pleased with her progress.  So we are in the process of moving to the "floor" (probably in the Neuro Trauma Unit) for the duration of her hospital stay.  She has a big turban wrapped around her head to help reduce the swelling and she has a drain in the back of her head to suction off excess fluid from the surgery.  Those will likely be removed tomorrow.  For now the name of the game is pain management and swelling control.  And she is doing well with both.

Thanks for your continued support and prayers.