Just what the doctor ordered

I  have post it notes everywhere to remind me of things that I need to get done. 

For weeks, I have had a post it note with the word "Blog" on it.   I am finally getting around to blogging tonight.   I will blame our new addition, time flies when you have a new puppy!

I can only describe Braeden's health and symptoms as plateauing. They have not gotten exponentially better, but thankfully they haven't gotten worse.  

• tremors and twitches are the same
• hand weakness on both sides are the same. We had a meeting last week with the school to discuss accommodations he may need next semester.  He is unable to write legibly because of his hand weakness.  This is definitely going to present a problem in some of his upcoming classes.  Currently, he is "pecking" by with his laptop.

On November 16th, I heard from Mayo Clinic, and they decided against taking on his case.  They felt that Duke and CHOP had done  a complete work up and they wouldn't have anything to add to his clinical picture. 

On November 18th, we were at Duke and Braeden had IVIG #5.  One of our doctors at Duke suggested that we "give" Braeden a break before pursuing a 3rd opinion, considering that Mayo declined his case and they are no new symptoms.  

Braeden has had quite the two years of surgeries, appointments, radiation treatments, OT, PT, lab work, MRIs, infusions, steroids for MONTHS and feeling just plain crappy.  

Taking a break may be just what he needs, until we figure out our next steps.

Thank you all for the continued love and prayers. Merry December to you all!

#BraedenBrave

#MrUnlucky

Next up:

Dec 15th-MRI
Dec 16th-IVIG#6

Jan 6th-Appt with nephrology, to hopefully start weaning his BP meds since he is off of the Avastin.