From early this week I said we had a busy week. This is how is started off-
I need someone who works in the medical field to explain to me, WHY does it take so frickin
' long for the doctor to come into the room?!?! This week we had an appointment with our wonderful neurologist (seriously I love him), but instead of going into the hospital we visited him at one of his off site
When I scheduled the appointment I got the FIRST appointment of the day. Thinking I'd be smart and we'd be outta there quicker than you can blink your eye.
Nope. Didn't happen. As luck would have it, I was unaware that they schedule you like cattle on the off site location and there were about 10 other people scheduled for the same FIRST appointment I had!. WTF
Well because I like this doctor so much I didn't put up much of a hassle. But for future reference and note to self:
BRING the frickin
' wheelchair...even if you think its too cramped or crowded or you think it will be easier...it will NOT be. BRING THE CHAIR.
Holding a 4 yr old on your lap who does not want to be on your lap, in an small over crowded waiting room with the heat blasting at lets just guess a warm tropical 101 degrees...makes for a very uncomfortable wait! Then he heat gets even better when they do finally call your name and the then move you to the "hot box" as I like to call it. The room where you get to sit and wait yet again but with the door closed so you have your own personal sauna!
Anyhow, onto the actual appointment. Seems because I'm not all that smart when it comes to reading the medical terminology
since Daniel's diagnosis of Congential
Bilateral Perisylvian Polymicrogyria
, every report I've attempted to read and question, we've always come back to the easiest answer: Well he has a malformed brain and its CBPP
. So I've always done my research on just that.
Well guess what I learned (and yes I feel like an ass) Daniel also has another malformation that I was unaware of but it is secondary so I guess why bother pointing it out or explaining it right, there is no changing it.
So lets add to the diagnosis: Cortical Dysplasia
So is the epilepsy from the cortical dysplasia
or the CBPP
? or does it really matter at this point?
Then another little tidbit of information I got from this appointment by the resident that comes in with the doctor. That a high percentage of children with CBPP
(Now mind you CBPP
is very, very rare and when Daniel was diagnosed there were only about 60 known cases in the US). Anyways as I was saying a high percentage of those children end up with the diagnosis of Autism.
Now I don't know squat about Autism expect that it is a broad spectrum and that generally the kids aren't sociable
, and there are different levels of severity just like cerebral palsy.Thats
the extent that I know of it. But still I was like GREAT, another thing to add to the endless list. Well he followed up the study with he strongly believes Daniel does not fit into that category
because he is indeed very social, outgoing and has awesome eye contact. But regardless of that....you know what two things I'm research now right?!?! Just to make sure?!?!?
Even with all that, it was a nice visit and I always leave there feeling uplifted. He always goes on and on about how well Daniel is doing. How high functioning he is comparatively
speaking of other children he sees with PMG
He said they recently did a study of 8 children with the same brain malformation that Daniel has. All 8 children had MRI's
to see if a certain area of the brain was developed (this arc for speech).
Daniel was part of the study. Of the 8 children five of them had none of the arc present in the brain. The other three had particle
or full arc. Daniel having had the least of the three with arc.
He said Daniel is the only one with the most "talk/babble", he was considered the highest functioning of all 8 children cognitively
and with speech.
This is a good thing. I am happy with that.....
I would love to win a subscription to Kiwi magazine. My 12 year old daughter is very socially conscious of what she eats and has helped us be aware, too. She found out about the way animals are treated that are grown for food, so we now only eat organic or "happy" meat! We love to cook and bake together.
Lori with the sbcglobal addy