Like in the past, it takes me a day or two to completely understand the details of our IBRF conference call. Not only is it a boat load of technical information, but this information is presented in medical terms. Granted, I can keep up (barely) but to really encode it in my brain takes some effort. It’s like preparing for a final exam in a post-graduate program… in your most difficult class. Ever.
So I again listened to the call (I record it) and added to my notes. It’s pages upon pages of chicken scratch that few would be able to decipher. I’m a little worried even I might have trouble reading it. When I ran out of blank paper — and didn’t want to risk getting up from the call — I began grabbing whatever was nearby. I wrote on store receipts, boxes, my arm, and various file folders. Had our bulldog Duke walked by, well, he would have been fair game.
One item that is ready to share is IBRF will make their home visit during the week of July 3rd. This is where they perform various objective test. This includes a qEEG, ERP (Evoked Response Potential), and BIS Monitoring (to measure “awakefulness”).
Independent of their visit, we will have a twenty-four sleep study performed. This uses a similar protocol to an EEG, but delves deeper and over a longer duration. We’re wanting to see if Ryan is having any normal sleep patterns (i.e., known as the circadian rhythm), and how much time (if any) he spends in the five major sleep cycles.
The only other item that I can report on is the status of the 3-D Brain model. It’s still being built. Ugh! We continue to push this because it is a prerequisite to using Deep Brain Stimulation (DBS) therapy.
Ken and Sue,
I’ve often wondered if playing classical music might be helpful too. I seem to remember that there was evidence that indicated playing classical music had a positive impact on infant brain development. Might be worth looking into and considering…who knows? I have some CDs that I could share with you if you are interested. Just let me know.
Happy to hear how productive your IBRF conference was. Ryan is in my thoughts and prayers always.
I play classical and songs he liked (which are not the same, in his case).
You are doing an excellent job recording this as it happens, and I know the record is invaluable to all the specialists helping with Ryan’s care. Do you have a routine of stimulation for Ryan that may involve music, favorite shows, or sports? I think, from dealing with my own son’s severe TBI, that music’s rhythms and vibrations help with healing. As my son emerged from his coma, ESPN SportsCenter’s controlled action and short-story, repetitive format helped him start reconnecting with a world that was otherwise beyond comprehension.
It’s like a took the page from your playbook. ESPN SportsCenter is a staple. I play both classical and songs he liked.
Music can be magical — a universal healer.
Gail Doyle says
Ken,Sounds like it went well Hoping they get the model to you soon (That was the one awhile ago,right?)..Looking for GOOD news when they IBRF visit .God bless you and your family .You are all amazing!!!!, Love Gail. Hugs to Ryan
Trust me, I think Duke would make a better paperweight than a notepad!
Ms. Blasé says
I’ll be waiting patiently with a smile on my face, anticipating the good news I’ll see posted here in 3 weeks 🙂
Exciting news! Looking forward to hearing what the IBRF has to report in July!
ALWAYS here <3
Ohhhh I didn’t know that!! I didn’t realize that they couldn’t begin the DBS until the brain model was built. C’mon IBRF Team — rah rah rah, sis boom bah, get that model built for our boy asap!!!!! Let’s get this show on the road for Ryan!!! C’mon you brilliant doctors, let’s get to it!!! It’s time to step it up for our boy!!!!