#B.A.S.S.

Hi to all, I wanted to update you all about Braeden's appointment this morning.  I am very appreciative of Dr. Fuchs coming in during his vacation week to see us.  What better place to be, than work when you are on vacation, right?   He started out the conversation saying how surprised he was by what his x-ray showed this morning. I believe the next word he used to describe the x-rays was perplexing. But honestly, are any of us surprised?   NOPE, this thing from the beginning has been the biggest mystery for all involved.  Very little about this whole thing makes sense.
I will attach a picture of both his MRI from last week and his x-rays today.  On the MRI, you can definitely see that when Braeden bends his head, that his spine becomes compressed.  On the x-ray, you can see that when he is sitting straight up, bending his head forward and backward that there is one part of his cord that is not moving with the rest of his cord.  This is one of the things that is  perplexing to Dr. Fuchs.  (Never mind, the fact that he has stenosis along with having the tumor.  As Dr. Fuchs said this morning, none of the puzzle pieces are fitting together, and Braeden issues are quite a mystery.) 

I will just let the pictures do the talking. (The X-Ray pictures are first and the MRI images are second.)

Braeden was fitted for a hard C-collar today, and he is to wear it while awake.   On a scale of 1 to 10 this rates around a negative 1000 for him.  He quite simply hates everything about it.  Hopefully, he will get the hang of it after a few days, and find a way to acclimate to wearing it.  One of the issues, is he tends to look down when walking, and with the collar he is unable to do that.  Rest assured, he says he is going to figure out a life hack to make it work. His first attempt is below, and as you can see he still has some brainstorming to do.   The thought is that if he wears this for two weeks and he shows some improvement with his hand strength, that he will be a good candidate for a spinal fusion surgery.  We continue to wait for CHOP.  We are holding the Avastin, in case he is scheduled for surgery on July 14th when we return to see Dr. Fuchs and Dr. Karikari.

Braedenism for the day

The doctors keep telling him that he needs to name this thing of his.  Because it is likely he is the only person in the world that has what he has.  Braeden decided he needed to come up with an acronym. 

On the way home today, he decided on B.A.S.S. (Pronounced like the guitar, not the fish.) 

Braeden's
A-hole
Spinal
Syndrome

We are open to any other suggestions. 
Thank you all for the constant love and care you show us.

#BraedenBrave
#MrUnlucky
#B.A.S.S.