Thursday, January 31, 2013

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

Wednesday, January 30, 2013

Landslide~~

The other day I got a nice little bonus from Amazon Mom, I got a credit for some MP3s... it was only $2.00 so I didn't have a lot of wiggle room with it- but I found the $.69 MP3's and found "Landslide" by Fleetwood Mac.  I've always loved that song, even the Dixie Chicks cover-- but now that I have Monkey it seems to mean more.

Lately I've been going thru some difficult realizations when it comes to Monkey~ and the lyrics...

Well I've been afraid of changing 
Because I've built my life around you- 
But time makes you bolder 
Children get older 
I'm getting older too

the lyrics... I get them now!! I really do... I've been afraid of changing, of letting go of somethings and accepting what I've denied for so long..... I've encouraged and pushed him for five years and he's been bold and done things no one expected- now it's my turn to be bold.  To step out of my 'comfort zone' and face reality.

Nothing sarcastic and witty left to say tonight, I'm emotionally drained~~ the landslide has brought me down.  So I'm going to leave you with Stevie and the rest of Fleetwood Mac...


Sleep well my darlings... sleep well!!
S~S





Rainy Days and Wednesdays...

WHOA~~ what a way to wake up this morning... storms and torrential rains, just when it was time to get ready... crazy weather here in my home area-- tomorrow... snow!! Yup yesterday nearly 70 and tomorrow SNOW??? W-T-F?? 

But it's Wednesday so the work week is half over and the fun of getting ready to move begins!! YEEEHAWW!! Don't be jealous... I know it's hard not to be, but try! At least I have three weeks, that's a lot of time- yes? So today I'm on the hunt for boxes!! Nothing like calling the local liquor store before 9am!! Who consequently denied my request for their surplus cardboard due to the Super Bowl this weekend~ I guess people who aren't  moving need boxes for booze- personally I think people who are moving need booze more-- boxes or not!!! Whatever, I will never understand some ways of the world!!

OK so I've told you I have a critter  child by the name of Monkey (NO~ his birth certificate doesn't say Monkey on it, but that's what we call the climbing, banana eater in my house)  I've also dropped some clues about his special-ness.  So I thought I'd use today's post to expand on that a little.  I don't want to overwhelm you my darlings with dropping all his diagnosis's on you at one time- after all, I have had the pleasure of discovering them one at a time- why deny you that joy?? 


Today I want to take time to spread some awareness and explain the root cause of all Monkey's issues-- Cytomegalovirus (CMV).  Go ahead, you can admit if the first thing you thought of when you read it out loud was MegaLo-Mart from King of the Hill~~ I did.  Then I learned about how devastating and non comical this virus can be.  CMV is a herpes-virus like mono or the chicken pox.  It's quite common, according to the CDC 50-80% of adults have been infected by the age 40 and most adults and healthy children who contract the virus have NO CLUE they've been infected.  They may feel like they've got the flu, a bad cold or at the worst, mono.  However, the devastation happens when a woman is pregnant and contracts the virus for the first time (this is called primary infection). 

The effects of the virus to an unborn child vary from mild to severe, from asymptomatic to fatal.  According to the CDC some of the signs of CMV that may be present at birth include but aren't limited to:

  • Premature birth
  • Liver, Spleen and Lung Problems
  • Small size at birth
  • Small head size at birth (microcephaly)
  • Seizures 

There are also permanent issues or disabilities that can occur as a result of Congenital CMV (cCMV) these include:

  • Hearing and/or Vision Loss
  • Mental disability
  • Small head size (microcephaly)
  • Lack of coordination
  • Seizures 
  • and Death
My little Monkey has several of these conditions and others caused by the virus.  Including the hearing and vision loss, microcephaly, seizures and developmental delays. We knew when he came home from the hospital he was deaf in at least one ear- the rest... We're still learning about, and he's nearly five now.  

So how do you prevent this from happening to you or someone you care about who's pregnant??

  • WASH YOUR HANDS!!!!!! Often and especially after changing diapers, feeding a little one, wiping a snotty nose or handling children's toys.
  • Don't share food, drinks, forks with little kids.
  • NO sloppy kisses from your little one (or any other kid no matter how sweet they look, they're small Petri dishes!!) 
  • Clean any toys, counter-tops, anything that comes in contact with a child's bodily fluids. 
And one that might shock you... if you're already pregnant... PRACTICE SAFE SEX!!! CMV is also transmitted via intimate contact!! 

Ok, I'm not the expert on the subject but there are folks out there who dedicate their life to educating and informing the public on this virus- and the devastating effects it can have.  If you're interested in learning more about this birth defect causing virus why don't you visit some of my friends... Stop CMVBrendan B. McGinnis Congenital CMV Foundation and although I don't know them personally... Centers for Disease Control and Prevention.  

Ok now back to my box search... damn you Super Bowl weekend!!! I hope all the drunk fans are living it up with my boxes!!!!! But don't worry, I'll be back tomorrow with a new and exciting look into what's know as Simply- Shonda's Life!!! 

<3 S~S

Tuesday, January 29, 2013

Howdy!

Gooooooood Morning Vietnam... No wait, it's 11pm in Kentucky-- wrong opening... 

Once upon a time... Ugh that won't work because well this sure as hell ain't a fairy-tale...

As the title states this is simply Shonda's (that's ME) life... the good the bad and the ugly... (isn't that a western?)

Guess I'll just start off w/a big ole HOWDY!!! 

I'm kinda new to this so just bear with me... quick update to bring any newbies up to speed... 

I'm a mom, a single mom, by choice- my son was adopted out of foster care-- been w/me since he was a day old-- they'd basically just cleaned him off when he came to live with me... Monkey, as he's affectionately referred to, has some shit going on w/him. BTW I don't plan to censor myself so this may be PG-13 at times... sorry folks! That's simply Shonda!  Anyhow... he's got some things going on due to this nasty virus CMV (Cytomegalovirus) that his birth mother (bio for short) passed along. I'm not going to go into detail now, I'll save that for later.  Just wanted to get the ball rolling for now... 

I'm very passionate about adoption and the issues we as adoptive parents face- I'm so passionate about it, I work for an agency that provides support and training for adoptive parents as the program coordinator- it's a pretty sweet job for me, right up my alley-- I get to create spreadsheets and presentations, yes, I'm a nerd girl!!. message me if you want to know more-- about the support group or the nerd girl part- whatever :)

I'm also always researching various disabilities and disorders in order to be on top of what's up with the Monkey- I love to share information too- so don't hesitate to ask questions about any of the things I have listed in my 'interests' as most of those revolve around 'the Monk'.  If I have answers I'll share them, if I don't-- I'll find them for you or send you to someone who I trust will be able to help you.

Have I mentioned I'm kind of a nerd girl?? I'm almost as into Marvel comics as The Monkey is... Never suspected in a million years I would know there are multiple Spider-Man universes happening simultaneously or would be able to recite the cast of the Avengers off w/out thinking- having a little boy sure has taught me a lot!!! As I mentioned before I LOVE making lists, forms and spreadsheets (ok maybe I crossed over into dork-ism w/that one...yes, no??)

I doubt this is a blog that will end up on Pinterest and ya know that's ok... I don't have as much time as most of those fancy lunch making, organizing, cleaning, creating, crafting moms have, shit that's why I use Pinterest, I let them do all the work!  I do work basically two jobs (one where I get 'paid' bi-weekly and one where I get paid every day in hugs, kisses and 'YOU ROCK MOMMY'-- that's the best job) but if you do like what I've got to say, tell a friend-- hell tell two... the Karma Fairy will help me thank you!!!!

*Disclaimer- this blogger isn't afraid to use sarcasm, to it's fullest extent
as allowed by local law.. . you have been warned!! 


S~S