Got Brace?

Got Brace?  

I know Braeden wishes he could get rid of one or two. 

He has been wearing his C-Collar and loathes it. That's probably the nicest thing I can say on his behalf about that subject.

Two weeks ago, the Occupational Therapist at Duke added 4 additional braces.  Two of which, he is using during the daytime for his left and right hand.  She wants the extra stability for his wrists.  His left wrist is extremely weak and "floppy" and if he were to dislocate that wrist it could cause another set of problems. 

Another set of problems is the last thing he needs. Can I get an AMEN!?!

The other two braces will be the  "two fancy custom-made for both of his hands that cost a small fortune" that he is to wear at night to try to keep his fingers from contracting any further. 

He has also been working his "OT program."  Think hand putty exercises, and wall push ups to try to increase upper body strength, etc.  

In the two weeks, since his initial OT with the Duke therapist, it seems he is doing something that is helping.   His hand strength was averaging around 10 pounds the week before he saw the new OT.  The 1st week of him doing "his program" his average was between 11 and 12 pounds.  This week his average is between 13 and 14.  It is definitely nice to see the numbers rising.

Yesterday, he had Avastin #10.  

Braeden-ism of the day yesterday.  

We take a picture of Braeden during every infusion.  Yesterday, he stated the obvious that he was running out of fingers to hold up.  I suggested we hold up toes for treatment #11.  That idea was nixed very quickly.  The kid wears shoes and socks ALL the time, and is not a fan of bare feet.  

I suggested a sign for his mask.  He thought about it, and then he said that he thought sharpie knuckle tattoos would be better.  OK, kid as long as you stick with the sharpies.  

#11 pictures to come...

We met a new intern, who had recently worked with Oncology Neurology team at Mayo.  He spoke highly of the ONC-Neuro  team at Mayo.

 

I told him that in two weeks if we hit a dead end with CHOP that he could expect a call from me, asking him to help with getting a referral at Mayo. (I think he took me so seriously, because I looked old enough to be his Mama, lol.)  

The disappointment of the UDN still hurts, but  I know it wasn't the path we needed to take. Braeden showed me videos on his phone yesterday from his bowling days.  I know the weight of all this is a lot for him to bear.  I know he misses his normal.  Answers to get him back to his normal is all we want for him.  As a family, we had a pretty good handle on the brain tumor side effects.  It is time to get this spinal cord tumor figured out.  

We are running out of options, and I will not stop trying to find the right place for Braeden if CHOP does not work out.  

We don't have a lot going on for the next week or so.  This Saturday he has another MRI.  Dr. Landi wants another spinal MRI on the books before CHOP.   

Keep the prayers coming.

Love to all.

#BraedenBrave

#MrUnlucky