Results of biopsy and LP

We got the rest of the results yesterday from Russell's muscle biopsy and LP.  The LP was to test the neurotransmitters, and it came back as totally normal.  (Yay)  The biopsy was positive for Vasculitis, which is inflammation of the blood vessels.  Vasculitis is just a symptom of whatever it is that he has.  But it helps us to go in a better direction, hopefully.  We'll find out more about this at our appt. with Dr. Swobodo at PCMC in December.  I prayed so hard for this testing to find something, and I'm so grateful that our prayers were answered.  Thank you for all your prayers too.

Nov 7, 2013

Russell and Scott got home late last night from their trip to Utah to have the muscle biopsy and LP done at Shriner's hospital.  He has a huge ace bandage covering the stitches and steri-strips on his left thigh, and just a few tiny needle marks on his back when they did the Lumbar Puncture.  This morning he was really favoring that leg, but the more he walks on it, the better it seems to be.  When he woke up, I found out he'd slid the ace bandage (and the gauze underneath) down his leg, so I could see the incision under the steri-strips.  I'm so so glad he is young enough that he won't remember this! It's a lot bigger incision than I'd thought it would be.  It's 2-3 inches long.  Not that it's huge...it's just that I had something smaller pictured in my mind.  I put the ace bandage back on as quickly as possible.  His leg was swollen and slightly purple around the ankle, but about an hour after I replaced the ace bandage the swelling went down a lot and the color got better too. 

I am so grateful he's doing as well as he is.  He doesn't seem to mind it very much at all.  Kids are so amazing.  He's dealing with it a lot better than I am.

He also met with the orthotics drs and was fitted for a Providence Brace, to wear at night.  They said his EDF brace is going to fit him for a long while still (Scott and I thought he was getting too tall, but they said it's still just fine) so he doesn't actually need a new one of those. 

The most amazing thing is that we finally have a 2nd appt. with the neurologist at Shriner's.  It's been over a year since we've gotten in.  We gave some new information to them on Tuesday, and I guess they now feel like it's important to see him.  Finally.

Now to just wait for the answers that I REALLY hope are forthcoming...