631 days

Braeden and I were at Duke today for what was to be his 6th & final IVIG infusion.   Braeden and I had "placed our bets" that we would be there till at least 5pm making it an 7 hour day.  We were wrong. We also wouldn't have guess that the Neuro-oncology team would end up singing Happy Birthday to Braeden a few days early.  They definitely don't need to quit their day jobs, LOL.

After speaking with the team it was decided that Braeden would skip the last infusion.  We all had hoped that the IVIG would have had a positive impact on his hand strength.  Typically, a patient will see results within weeks of the first treatment.  We definitely gave it the old college try and it proved not to be our "miracle".  

So what's next?   

• Appointment with Nephrology in January to try wean and discontinue blood pressure meds.
• Repeat MRI in 3 months. Yesterday's, MRI showed no new changes.
• Because of Braeden's inability to write legibly, he is going to have a  consult with Neuro-Psych. They will do an in depth evaluation of his capabilities and will be able to make the school aware of any new and updated accommodations that he will need. 
• Braeden will learn to navigate his new normal. The child has lost a lot because of this damn spinal cord tumor. (Lord knows, he has already lost a lot from his brain tumor.  He has managed those loses more gracefully than most.)  
• BUT, he is going to be ok! He will NOT lose his smile. He will NOT lose his sense of humor that never fails to make me laugh.
• It's also my hope that this will be the last post of this blog.  I wrote this blog to keep family and friends updated on "everything medical"  Braeden.  (No news is good news or in our case, no new blog is good news.)     
  
• Most importantly, he will ALWAYS have his family and friends that will there for him no matter what.

I use an app to keep up with important dates.  Hard to believe that Braeden has only had 631 short days of his life that have been "Duke Free".

Prayers that the days, months and years going forward will be kind to my sweet HERO.   

#BraedenBrave

#MrUnlucky