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 locations.
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 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 locations.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.....
BUT this cerebral palsy crap sucks!
so I always ask....What else can I do to help him with the CP?
I dont know why I ask because I always get the same answer....continue doing the therapies, Daniel has the desire you can see that, and he wants to walk, we just have to get his upper body talking to his lower body!
Oh btw-totally off subject but I'd like to win :)
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5 comments:
Hi Melanie
I'm sorry about another dignosis but it doesn't change Daniel. And about the autism, NO WAY is Daniel fit the spectrum of that the 5 minutes I met him he had great eye contact and facial exspression!
I do have a question and I may have asked once before but who do you guys see for neurology we want to change because we are not happy with his current one she just never has enough time to explain anything its always he is strong willed and he'll do things at his own pace! Well hopefully your week starts to slow down and you get 2 mins to yourself!
No part of me thinks that Daniel has any type of autism. He's a little social sweetie. I'm not a doctor or anything, but look at the kid!
Hooray for highest functioning in the group!!! I'm pretty sure that's code for "Mama doin' good" in case you didn't know.
Oh boy, I haven't made light of this to anyone yet, but now that you mention autism..... Logan is being tested and it effin sucks! The questions they ask on those tests and having to admit Logan fits a chunk, not all, of the profile is like ripping my beating heart right outta my chest with a spoon and smashing it into a bloody pulp. Yes, it hurts that bad. You know.... it never ends.
I often think or wonder if I'm in denial about Logan's entire being. This whole cerebral palsy bullshit and then the real possibility of autism and him not being able to talk but yet I try to tell myself that inside he is all there cause it's what I want to believe, but is he? How will I ever know?
I'm struggling....
Hi! I found your blog through other blogs from my friends in a micropreemie group...
I have twins that were born at 26.1 weeks. They are now 2.5 and although we have many fewer appointments than we once did, we still see some doctor regularly. Here's my new trick:
If you have one, take a laptop. A lot of offices now have wi-fi guest sign-ins. You can log on and find utube videos (we like Elmo) or just a a video and play it without needing a connection.
It has been a godsend. Trying to keep two 2.5 year olds entertained in a small office without them tearing it apart was a nightmare - and my girls are really good!
And I'm with you...how can you schedule 10 people at the same time???? That's just craziness.
:-)Johelen
www.natandabby.blogspot.com
Melanie,
My husband lost his job this summer and we, too, started talking about where is the best place to raise our Eli. I asked our local Parent to Parent director, and she in turn asked our Washington state P2P director. Here is her response:
"Gosh off top of my head
Vermont
Minnesota
Iowa
Wisconsin
Massachusetts
Pennsylvania
Hawaii
Have her call state p2p directors at those states before heading there. I also think Arizona and Colorado sounded good, but just trying to remember from conversations at national mtgs.
www.p2pusa.org
Also, Hawaii is of course beautiful but very expensive to live there. Get anyplace and lots of racial issues. Also heard the 5 oil rich states were better than all others- Texas, Alaska etc. But many states like Texas, Arizona are also struggling with immigration issues. Good article on "five faces of uninsured" in USA today 9/23.
Susan"
I met a woman on Facebook who says West Des Moines, Iowa has wonderful programs - and even a school that is totally accessible for wheelchairs, etc... She says the bigger metropolis' have more people to make happy and it's harder to change things....and that smaller towns are better because they're willing to try new things.
I've read about lots of grea programs/therapies in Chicago and other parts of Illinois.
It's a scary thing to think of moving and not knowing what is best for your kiddo. Good luck...I look forward to hearing what you come up with!
I'm off to read the comments to see what people told you :)
I'm in Washington state. I don't recommend it here! Unfortunately.
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