Thursday, February 2, 2017

He's Doing Great....

....all things considered, for a boy with TS, for a boy with multiple bilateral brain tumors, etc, etc.

 Sadly, this is not enough for me and I want so much more for this boy.  Those "he's doing so well" words feel trite.

As we wait to see Dr. Neuro, Rhett is thrilled to pose for a selfie. LOL Um, not so much.

Yes, I am grateful. Yes, Rhett's health could be oh, so much worse. Yes, we are ever so lucky to have Rhett.

Yes, we want more for him. We want HOPE and encouragement.

After, 100+ "seizures" since Christmas Day (and more before which were not documented), we now wait for testing. VEEG (24 hr stay, video EEG) MRI,  levels, and mental health.  The Neurologist is not convinced that the sensations Rhett is having are seizures as they are focal and affecting one part of his body, not a whole side.  BUT something is going on. The brain sensations, the hand sensation, the memory challenges, the processing challenges ("You're confusing me!").  So, we wait for the chances to get answers.

I hate waiting. Don't you?

Hopefully the VEEG will take place within 3-4 weeks.
MRI? A year?

As expected, CBD Oil was not recommended by Neuro. For a few reasons. All reasons which seem to be based on the Big Pharma control factor.  Oh, Big Pharma, I have such a tolerance-hate attitude towards you.

On a secondary note, a new referral for Opthamology at ACH has been requested as it has been several years since Ophthalmology has seen Rhett. Recently, our family Optometrist expressed concern at the size of the tumor in Rhett's right eye. According to the pictures, Dr. B took two weeks ago, the tumor has grown dramatically. Opthamology usually has a three month wait. Hopefully, it's not longer.

After a 2hr appointment, "hospital cake" is well deserved.

So, there ya have it. Rhett continues to seize several times a day and we are waiting for  the phone calls to inform us on upcoming appointment times.

No comments:

Post a Comment