Window To My Soul~~

Good Thursday Afternoon my pretties!!! Hope the weather is not as crazy where you are as it is here-- we had 70 on Tuesday and today, it's snowing!! The wind is whipping so hard at my 7th floor office window it makes me think I'll see Dorothy and Toto any minute now~ and it's C O L D... Butt. Numbing. C O L D!!! I love winter- but these extremes, well they're extreme!!

That sums up the weather for the day~~ And next up in today's news.....

Well Monkey is starting his Kindergarten readiness at Early Start- and one thing we're doing to prepare is letting him go into class solo.  For two years I've gone in, helped him put his stuff away, talked w/the teacher, helped him wash his hands etc- Now I take him to the hallway and tell him good-bye, he kisses me and waves as he's running into his classroom.  Suddenly I feel unneeded~~ BUT this is HUGE for him.  He's doing so wonderful and is becoming so independent;  my goal after all,  was to teach him to be independent in this cruel world. Then I hear him holler-- "at da winnow!!" After dropping his (empty) lunchbox off on the table-- don't ask right now-- he runs to the window facing the parking lot so he can see me leave- and wave and.... blow a kiss before running off to start his day!! So although I may feel unneeded I do know I am wanted- by my independent Monkey! That fleeting second in the window means so much to both of us, it's become a daily ritual.

I've said I'm trying to make Monkey as independent as possible in this cruel world, I JUST said it in the paragraph above... I'll wait while you go back and read it... ya see it?? Ok now- why am I so adamant about that? Because Monkey has (this is hard for me to say much less type and admit) Monkey has brain damage- remember yesterday I gave you a quick intro into CMV? Well that nasty ole virus didn't allow my sweet boy's brain to develop like 'normal' *although I've been in medicine long enough and worked w/enough people to know NO ONE IS NORMAL~ only varying degrees of different* His official diagnosis is Polymicrogyria.  I know, it's another strange word I'm throwing out there for you but it means literally "many small wrinkles in the brain".  I'm sure you're picturing a brain in your head- get it? oh never mind! But you're visualizing the brain and you think... but it's supposed to have wrinkles and look like a nicely formed head of cauliflower- welll you're right but with Polymicrogyria (PMG) these wrinkles are smaller and less pronounced.  See what happens is during in uteru development the brain cells don't reach their intended destination causing the brain to be formed improperly.  This malformation appears as small wrinkles which don't process the information it receives like a typically formed brain does.  This can cause effects which resemble a stroke even.  Just like most disorders the severity of the malformation is what determines the symptoms and problems that impairments in these sweet babies.  

Symptoms of PMG can show up in swallowing and speech issues, reflux, seizures, Cerebral Palsy (CP) and lack of muscle coordination as well as the possibility of impaired cognition and developmental delays.  As expected since it affects the brains reception it can cause problems with hearing, vision, and breathing among other bodily functions.  The impairments depend also upon where in the brain the malformation occurs.  To learn more about the parts of the brain and their function- click here... Brain Parts and Function.

Monkey has hearing loss, visual disturbances, seizures, muscle tone issues, speech delays, and behavior issues due to his PMG.  Knowing that it's present however has helped to put the pieces together and gives us an idea of how to help with these individual impairments.  

So how do you find out if your child has PMG?? Usually PMG is diagnosed secondary to another condition you're seeking treatment for your child about; CP, Epilepsy, hydrocephalus, macrocephaly, microcephaly- and many more.  An MRI is ordered and the PMG is discovered then, however it can still be difficult to diagnose- Monkey has several different diagnoses on his MRI reports, depending on who was reading it that day.  

What does this mean for Monkey and other kiddos with PMG?? Each child is different due to the degree of their PMG- however, for my boy so far, it means he learns different, has to be reminded over and over again of some things but can memorize entire movie scripts, it means he gets a little wild sometimes but is one of the most loving children you'll ever meet.  It means I get excited every time he does something others might think menial.  We celebrate the little things in our house.

Again I'm not an expert on the subject~ in fact due to those multiple diagnoses I'm just learning about PMG from our last MRI report from 2010.  However, there is an excellent, family oriented and informative page at PMGawareness.org.  PMG is much more involved than my quick synopsis but I wanted to introduce you to the disorder and give you a snapshot of Monkey and our daily venture...

Stay warm my lovelies and enjoy your Thursday evening!!
S~S