** Our Site Currently Under Construction! **

Please excuse if u notice over the next few days, maybe even up to 2 weeks, many changes around the blog-site! I'm looking for a new background that will fit our site JUST RIGHT, & working with some other applications that I want to add!!

Doesn't mean you still can't post something if ya got something to say, then please, by all means, POST IT! <3 <3 :D

I'll take this post down as soon as I feel I'm completely happy with the look & feel of the site!

Love you all & God Bless,

Andrea

Here is someone w/ Hydro looking for another w/ Hydro to talk to..

Hi. My name is Taryn.I was diagnosed with Hydrocephalus when I was a newborn. I also have a aracnoid cyst on my brain stem. I've been looking for a support group for the past couple of years. I had 9 shunt revisions in 2005. I suffer from chronic headaches every day. I've never had any support and have been looking for some people who could understand what it's like to live with hydrocephalus. My email address is coolchic128@hotmail.com. I hope to hear from someone who understands what it's like to live with Hydrocephalus.

**Taryn, although I PERSONALLY don't have Hydrocephalus, my dear daughter does & since she's only 2yrs I can't imagine what she feels like ( headaches, etc ? ) But I'm here if you ever want or NEED to talk. UNFORTUNATELY there was a local support group meeting in April but it got cancelled last minute & I'm not quite sure why.. BUT I'll keep you posted via email if another gets scheduled! & Also I apologize for my MANY MONTHS that have gone by without a reply... I mentioned my 2yr old daughter, she has 7 therapies in a 5 day week, PLUS I also have an almost 8yr old son who I TRY to give equal attention to so I kinda got "away" from the computer in general for a while, but I'm working on getting back in the SWING of things - my apologies!
Hope to see you around on here & TTYS
xo
Andrea & family

☆ 1st Post of 2010!! ☆

Happy New Year everyone!!

We made MAJOR progress in the world of "Hydrocephalus" & "Spreading the word" in 2009 - So NATURALLY everyone's goal would be to do EVEN MORE great things in 2010.

╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯
╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓

It starts with people sharing their stories.
The reason that half of the population has never even heard about Hydrocephalus is b/c of how "hush hush" getting out there & telling your (or your family members') stories..
I'll even admit, when I was 7 months pregnant and the Doctor's told my fiance' and I that our daughter would be born with Hydrocephalus, we had to have it 100% explained to us b/c we'd NEVER heard of it.. I mean, you can KIND OF figure that it has SOMETHING to do w/ EXTRA FLUID SOMEWHERE in the body b/c of the "Hydro" in the word - but other than that ??

╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯ ╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓

So also in 2009 a lot more people got out there & told their stories, creating awareness, etc. THATS another goal. DON'T be afraid to tell your story, we're all a family in the Hydrocephalus Community.. I've HONESTLY NEVER met a group of people that are THIS supportive and SO un-judgemental. All they want to do is HELP & be there for SUPPORT.

They inspired me SO much that I PERSONALLY wanted to begin a Support Group of my own in my area.. Which is what THIS site that your reading right now is devoted to.
BUT, as you can see, as of right now I only have FIVE followers.. ( ONE of those being ME LoL )
As you can see in the SideBar, I've made flyers & been posting them up in my area at ALL local Doctor's offices, I REALLY need to post them up all over the Neurology & Neurosurgery Departments of Children's Hospital of Pgh. LUCKILY, last week of January Rowan(my daughter) DOES have an appointment at Children's Hosp. to see her Neurologist. SO, HOPEFULLY I'll be allowed to post a few up there that day! Because our goal was to build up the people FOR the Support Group during these Winter / Holiday Months, and I KNOW it's still Winter, but we've passed the Holidays now officially, and I feel like I haven't made much progress..

I was hoping that in a year, maybe two, we'd even be able to build up enough people in the SouthWestern / Pittsburgh Pa Area to even have a "Walk". The Hydrocephalus Association's goal for 2010 is to have a "Walk" in all 50 states. Last year they had a Walk in my state of Pa - but it was on the COMPLETE other side of the state in Philadelphia, which is "by myself" a 7 hour ride.. But to drive it w/ Rowan, a 21 month old baby, you can EASILY add at least an hour or two onto that original 7 hours..So we'd have to like, get a hotel, spend the night & make a big thing of it.. Which just wouldn't be easy with Rowan. She, like most kids her age, has a hard time falling asleep anywhere but home. and she ALSO has a really tough time on long car rides..
*LONG STORY SHORT, I come up with this "Master Plan" that I'm going to try to arrange what they've got goin on out in Philly, over on THIS side of Pa in Pittsburgh.. I've just been unsuccessful so far.
So I'm HOPING HOPING HOPING that this blog-site (along with all of my flyers!) get "out" to the right people in my area so we can get this thing rolling! NOTHING would make me happier!

╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯ ╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓

So if your reading this & your NOT from my area - Spread the word to anyone you may know..? If you ARE from the SouthWestern Pa, Greensburg, Morgantown WV, Uniontown, Irwin, Janette, Pittsburgh, etc. ALLLL of those cities & the surrounding ones are included! Then contact me - leave a message on the Support Groups blog-site here, or visit my personal blog where I track my daughter's milestones, accomplishments, & struggles with Hydrocephalus, Cerebral Palsy, & Epilepsy, @ http://andreajunelleb.wordpress.com/
and you can leave a message there for me as well!

╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯ ╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓╰╯╭╮┗┛┏┓

The support group meetings we're planning will be MORE than just sitting around & sharing stories. While we WILL do that - we'll ALSO have Guest Speakers some meetings, from Doctors to Therapists, -► ANYONE knowledgable on Hydrocephalus. Also activities, meet & greets with family members, picnics, etc. And it's nothing you have to be "Married" to - I'd like to have a meeting once a month, or at LEAST once every OTHER month, and It would be on the SAME DAY of every month, which would be picked BY the support group & what works for everyones work / school / activity schedule.

So I'm waiting for YOU!! Contact me!❤(◕‿◕)❤

♡2010♡ ❂❂❂ ⒷⓁⒺⓈⓈⒾⓃⒼⓈ ⒶⓃⒹ ⒼⓄⓄⒹ ⒸⒽⒺⒺⓇ ❂❂❂ ♡2010♡

♥ ℓﻉﻻ٥ ♥
Andrea

December 27, 2009

Well we're nearing the end of 2009 now that Christmas has passed..

I wanted to mention some of the great things that have happened in 2009 in the world of Hydrocephalus :)

☛ In 2009 Hydrocephalus became recognized around the Nation. It was voted in July that September from here on out be "Hydrocephalus Awareness Month"!!

☛ There was "The First Annual Gracie Classic" - A golf tournament raising funds for the Hydro Association

☛ "Walks" There were more "Hydrocephalus WALKS" around the Nation in 2009 than any other year! And the goal is to have AT LEAST One walk in EVERY state by 2010! Lets make it happen!!

☛ "Boozle the Hydro Bear" was introduced! He's available for purchase on the Hydrocephalus Association's Website, www.hydroassoc.org
He's just your average teddy bear, but he has a shunt! YOU can perform shunt surgery on him, learning for yourself, and showing others and/or your child HOW exactally shunt surgery is performed :) He's ADORABLE & I WILL be purchasing one of these for myself & Rowan to have :)

☛ I'm SURE it's happened here & there before, but Hydrocephalus was in the news in 2009! Heres the link: www.myfoxtwincities.com/dpp/health/In-Depth-Jumping-for-Jack-nov-10-2009

☛ AND AGAIN in local news! :)▬► www.hometownlife.com/article/20091213/LIFE/912130400/1103/NEWS10/Livonia%20woman%20wants%20to%20make%20hydrocephalus%20a%20household%20word

☛ Last but not least, FOR NOW that is, in 2009 was the "Founding Year" of the SouthWestern Pennsylvania Hydrocephalus Support Group ;D The website your reading RIGHT NOW began in September 2009 as well!


..I've found COUNTLESS times Hydrocephalus has made news in the media this year, and hopefully, in 2010 & years to come, Hydrocephalus will become a Household "term", like Cancer for instance, and people will stand up and SPEAK about their disorders and/or their family members' disorders w/ Hydrocephalus to increase awareness, because in the long run, the more awareness we stir-up, the better chance that we'll see a CURE someday sooner, rather than later. And ofcourse that would be the wish of ANYONE with Hydro OR a family member with it. I know personally I'd give just about ANYTHING to know that my daughter would be CURED, and not just "temporarily" fixed w/ the band-aid of a Shunt. While Shunts are GREAT, and THANK GOD FOR THEM - at the same time, a cure would ease the minds of SO many, including me.

Well, thats it for me today 【ツ】
I know there were SOOO many more GREAT things that happened this year in the world of "Hydrocepahlus", but I'd be here ALL NIGHT typing them, so there are a few for you to look at & think about, and just remember it's up to us to make any change! Spread the word, share your stories, and join support groups & "Walks" around the country in 2010 to support the cause! :)

God Bless All of you, thank you for reading & I'll be typing at ya again soon I'm sure!! 【ツ】

•*¨*•.¸¸♥ ¸¸.•*¨*•
Andrea

☃ Merry "Week Before" Christmas! ☃

Hello Everyone!
I've been handing out our flyers like CRAZY, to all 6 of my daughter's Therapists to give out to their OTHER clients & to hang up at their offices, hung up at my Daughter's Primary Care Physician's office, mailed a few out to hospitals in the Pittsburgh area, and don't worry, I just need to make more copies LoL! I'm no where NEAR done yet!

I CAN NOT believe, after ALL of the flyers that have been handed out & posted, and ALL of the promoting on this website, as well as our FaceBook site gaining at least 1 new follower every day, that I have YET for anyone to contact me in interest to JOINING our Support Group.. :( Kind of sad..

I'm HOPING that it's the holidays.. that people are just simply BUSY with shopping & decorating, etc. Because I PERSONALLY know 1st hand that I haven't been able to spend as much time on the computer as I "usually" would had it NOT been the "Holiday Season".. So hopefully once we hit the new year (2010 YaY!) & people get "settled" from all of the Holiday crazy-ness that I'll get some emails or contacts here on the webpage.. I HOPE!!

But today is the "big" Snow-Storm day ( Saturday / 12.19.09 ) At least on the EastCoast that is..
The news has been even cutting into "regular" TV Shows to update us on just HOW BAD it is outside & I HEARD that the state of Virginia declared a State of Emergency already! o_o! I'm about an hour OUTSIDE of Pittsburgh, but today I'm wishing I was IN Pittsburgh b/c according to the local news, Pittsburgh is only getting approx. 2-4 inches of Snow, however SOUTH & EAST of Pittsburgh (ME in other words...) is getting 4-8 inches! I heard that Garrett Co. Maryland (little under a 3 hour drive from Me) ALREADY has SIXTEEN INCHES! & it ain't stoppin NO TIME SOON!! Thats insane!

This MIGHT be one of those SnowStorms that go down in the History Books like, "THE GREAT DECEMBER SNOW STORM of 2009" ?? Never know -- it's PRETTY bad out there!
I PERSONALLY, am TERRIFIED of the snow, well...xScratch Thatx not scared of snow ITSELF, but scared of Driving in it.. The winter of 2006, before little Rowie was even THOUGHT of LoL, I was driving Anthony home from his friends house about 20 mins away from ours.. As soon as I noticed the snowing outside I said that we'd better get going before the roads get TOO bad, BANG ALL of the sudden the roads were TERRIBLE, covered in black ice.. My son was sad b/c we'd just left his friends' home rather earlier than we usually would have BECAUSE of that snow so he was crying, and I let him sit in the front seat.. he sat up front with me & cried on my shoulder how he wanted to go back to his friends, all the while I'm concentrating on the roads.. but his crying was persistent & took my concentration away... So for ONE MILI-SECOND I took my attention away from the road to make a silly face or SOMETHING, ANYTHING to cheer him up, and all of the sudden we start going down a rather steep hill & I hit the brakes 'n POOF - sent us flying into the other lane where we hit a ditch & rolled the car several times & landed on the trunk of the car ( when all was said 'n done the ACTUAL trunk, was IN the backseat of the car = the trunk was the back seat..) ALLL I remember while we were going through the air was GOD, GOD, PLEASE save Anthony - PLEASE! We rolled until we landed on the trunk like I said, then fell forward into a tree, a nice man behind us saw the whole thing & pulled over behind us out & pulled us out through the windows ( the doors wouldn't open ) & called 911. The entire time we waited for the ambulance I just keep examining Anthony, he was crying - but i didn't know if the crying was from FEAR or PAIN.. So I'm checking his teeth, making sure there were no broken limbs, just - In an absolute TIZZY.. Finally the ambulance arrived & they wanted to put me on a stretcher, they said it was "protocol" any time someone "flips" in a car that they ride to the hospital ON the stretcher WITH a "neck-thingy" on - I ABSOLUTELY REFUSED. I said I needed to be by Anthony, so they made me sign several papers/waivers? saying that I absolutely declined the stretcher & that I can't try to come back years from then & blame them for neck/back injuries.. THAT was the LAST thing on my mind at that time.. We got to the hospital, and as SOON as I felt that Anthony was "Safe" with the doctors & getting checked out BOOM, a Migrane fell over me & I felt like someone had beaten me with a baseball bat for about an hour! But they did x-rays & CT Scans of me after they were done with Anthony & we were both fine, just some brushes & bruises, they thought I possibly could've had a mild concussion and thats why I all of the sudden got that POUNDING feeling in my head as soon as I knew my son was being taken care of.. but the car was MANGLED - and I guess my moral of the story was that, Yes, I did wrong by putting him in the front - BUT - had I put him in the back, WHO KNOWS what could have happened to him? Because remember like I said, the back seat was 100% smashed in b/c of our landing on the trunk..

So God works in mysterious ways, right? --The accident MIGHT or MIGHT NOT have happened had Anthony been in the back in his carseat, but if the accident DID still happen with him being in the back, who KNOWS what could've happened to him? I feel "at ease" that he was next to me in the front seat where I could try to hold onto him rather than in the back where I would have had ZERO control..

And up until Rowan's birth & how scared I was, and then when she was 3 days & had her first brain surgery, then 10 days later when she had her SECOND brain surgery, THAT was THE SCARIEST evening of my life.. and it STILL ranks up there with all of Rowan (my daughter's) Hydrocephalus experiences..

So THAT is why I DO NOT like the snow. I am ABSOLUTELY TERRIFIED to drive Rowan in the snow, and even still scared to drive Anthony now that he's almost 8 years old! REALLY, the only time I'm not DEATHLY afraid of driving is when I'm driving ALONE in the snow b/c it's just ME, and I can concentrate without having to worry about harming my passenger(s) in any way. That accident with Anthony 3-4 winters ago REALLY just gave me a mental scar that I can't get rid of.. Thats why I'M HOPING that this snow storm comes and goes quickly :)

Just a lil story thought I'd share about driving in the snow! ;D (Can ya tell I'm bored on this stuck inside snowy day?) LoL :)

Well, thats all for now folks, I DO look forward to hearing from SOMEONE, ANYONE soon that is interested in joining our local Support Group, and like it says on the flyer, it WILL be a support group where people who need a shoulder to lean on will MOST CERTAINLY have one, but there are also planned "Speakers" such as Therapists, Neurologists, Neurosurgeons, etc. As well as activities & "meet 'n greet"s planned as well. So don't shun away b/c you don't think you need "Support" for YOU or your LOVED ONE's Hydrocephalus -- it's MORE than JUST that. ;D
If your interested, either email me, comment below, or visit "Rowan's Developmental Journey" <- My Daughter's Blog where I track all of her Therapies, Dr. appointments, struggles, milestones, accomeplishments, ETC.! & you can post a comment to me there as well ;)

If your NOT in the SouthWestern Pa area but DO have Hydrocephalus or a loved one with it OR, your just interested in learning more about it, By ALL MEANS, just click "follow this blog" & become a member (if your not already!) & Follow my blog posts here! :)

The more followers, the more we get the word out, ALL THE BETTER!! :)

✔ FACT of the day -- Did YOU know that in 2009, the month of September was named NATIONAL HYDROCEPHALUS AWARENESS MONTH! and October was named NATIONAL SPINA BIFIDA AWARENESS MONTH!
FYI ღ!!

Much Much ℓﻉﻻ٥ to all who read :) THANK YOU,
Andrea

a friend looking for someone to talk to :) Help Please:

My name is Jennifer. I am 25. I have congenital hydrocephalus. I would like to talk to other hydrocephalics on a regular basis, if you are interested in talking, you can message me. {This was posted on FaceBook, her FaceBook name is Jennifer Lucas & you can find her on OUR SouthWestern Pa Hydro Organization FaceBook Page which can be found if you click on the title of this post}

Thank you all for reading, & I hope Jennifer finds a good, long-term friend to talk to! ღ


xo
Aj

☀ New flyers are DONE!! ☀

Well, not as "artistic" as I would have liked, but I WAS able to get the HA's logo at the top, then the rest is just info info info.. BUT, info is a good thing right??! ;D

Well, I've looked through ALL of my "posting options" here on "Blogger" & I wasn't able to upload the pic of the flyer onto this post - so I had to put it on the sidebar as a picture. ✯ That works too! ✯

☀ So if you will please look over to the side of your screen where all the Widgets 'n Gadgets are, above the Hydro Assoc's pic with link, is a "thumbnail size" of OUR FLYER!!! ☀

YaY!! Today I'm making flyers for our group!! ;D

Unfortunately I don't have a printer here on my computer, my fiance has a portable computer and nor does he have a way of printing either, SO, I FINALLY was able to get in contact with a very talented (artistic) friend who has a computer, printer, and the talent to help me make a good flyer to respresent US! ;D
The plan is, to go over there around dinner-time-ish & put an actual NICE, PROFESSIONAL flyer together for our group to spread the word & HOPEFULLY recruit more people!

I would LOVE to be able to put on the flyer saying that we meet "the 2nd Saturday of every other month" or SOMETHING LIKE that.. but unfortunately, with only having a few people so far, like I think I've said before, I NEED to get a SOLID group of anywhere from 7-10 people ( or more! ) and once I have the basic group put together, then we can figure what is good for everyone - for instance will the majority of my group prefer to meet in the mornings? Afternoons? Evenings? Weekends or a WeekDay? I don't & WON'T know these things until I get my first small group of SOLID people totally interested in this, and that I KNOW, are "IN" with us. <-- does that make sense? LoL!

So THAT being said, the flyer will be SOMEWHAT hard to put together b/c prettymuch all I can say is that this support group exists, it's MORE than just a support group - guest speakers & activities will be planned for as well, and contact info: my email address, THIS group blog URL, & our FaceBook page...? Then hang them EVERYWHERE!! HaHa! EVERY doctor's office, EVERY local hospital, ALL OVER THE PLACE in Children's Hospital of Pittsburgh, ☀ EVERYWHERE!!! ☀

And PLEASE PLEASE anyone who has any ideas of MORE that I can add to the flyer, I'm open to ALL ideas - leave me a comment on here, email me, do whatever :)

Well, I'm off to give it some thought.. Don't worry though, as soon as I DO get the flyer(s) made I'll make sure I save a pic of it to my computer so I can post it for everyone to see!!
Heck, I'll email 'em to people!
I'll be forever known as: "Andrea, the crazy Hydrocephalus group flyer stalker"!! LMBO!!

Wish me luck!

♥ ℓﻉﻻ٥ ♥

Andrea - the crazy Hydro group flyer stalker lady! ;D

A Badge for our FaceBook Page

Andrea Beveloque Krause is a fan of

SouthWestern PA Hydrocephalus Organization

Create your Fan Badge

Read on Please :)

First, I’m going to copy & paste what was written by a friend of mine, Jenn Bechard, on FaceBook about a young boy with Hydrocephalus named Kadyn, and how ALL OF US can help give him a better Christmas this year, this will be the first Christmas he won't be spending in a hospital (yes, he has Hydrocephalus)

written by Jenn Bechard:
Christmas for Sara & Kadyn
The response has been overwhelming so far and we cannot thank you enough for participating in our first “JUST BELIEVE” Christmas project. Sara (Kadyn’s mom) is absolutely thrilled that we are doing this! All she is asking for is a great Christmas for little Kadyn. We are hoping and praying that we cannot only help them but also that they can celebrate this Christmas at home. Kadyn is 2 and has never been home for Christmas. He has always been in the hospital with his Mom.

Please remember gift card amounts can be of any amount. We appreciate any donations, big or small. We have asked that you please let us know what you intend on buying if possible. This will help us let people know, when asked, what is still really needed for the family. We ask for your name but this will not be included in the updated list sent out to people, It will just state “purchased” so that everyone has their privacy!

Cash or checks are welcome too! If you would rather donate a check please make checks payable to Sara Inman.

All items can be mailed to:
Jennifer/Denise Bechard
15315 Golfview Street
Livonia, MI 48154

written by: ME! :D
**Since there was SUCH an OVERWHELMING amount of Christmas cards & gifts for “Noah” ( who I wrote about in a previous post ) I figured I would mention Kadyn as well. Everyone keep your fingers crossed that he’ll get to spend Christmas at home this year and not at the hospital! *



Next, there is a website that I belong to that I frequent actually, it’s www.cafemom.com and they have, oh I dunno, probably over a MILLION different forums you can join!! From single moms, to Lesbian moms, to Coffee drinking moms, & ofcourse, groups for moms with "Special Needs" Children.. I think I belong to 5 or 6 forums there, but theres no limit to the amount of forums you can join, and believe me, there IS something for everybody there!!
ANYWAY, yesterday I was reading through posts in “Children with Special Needs, etc..” and a post by the group leader,(screen name - Akhlass), was “What is Cerebral Palsy?” and I ABSOLUTELY LOVED IT! So naturally I copied & pasted it into my “notepad” & after I thought about it, decided to share it here on our blog.
I know not ALL people with Hydrocephalus have CP, but my daughter does, so I DO often get asked "hey, what exactally IS Cerebral Palsy" quite often. But there IS a signifigant amount of people that have Hydro, and CP BECAUSE of the brain damage from their Hydro (which is my daughter's case)
So whether CP interests you or not, it's an informative post to read, & I hope you enjoy :)



What is Cerebral Palsy?

Doctors use the term cerebral palsy to refer to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but aren’t progressive, in other words, they don’t get worse over time. The term cerebral refers to the two halves or hemispheres of the brain, in this case to the motor area of the brain’s outer layer (called the cerebral cortex), the part of the brain that directs muscle movement; palsy refers to the loss or impairment of motor function.

Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities inside the brain that disrupt the brain’s ability to control movement and posture.

In some cases of cerebral palsy, the cerebral motor cortex hasn’t developed normally during fetal growth. In others, the damage is a result of injury to the brain either before, during, or after birth. In either case, the damage is not repairable and the disabilities that result are permanent.

Children with cerebral palsy exhibit a wide variety of symptoms, including:

•lack of muscle coordination when performing voluntary movements (ataxia);
•stiff or tight muscles and exaggerated reflexes (spasticity);
•walking with one foot or leg dragging;
•walking on the toes, a crouched gait, or a “scissored” gait;
•variations in muscle tone, either too stiff or too floppy;
•excessive drooling or difficulties swallowing or speaking;
•shaking (tremor) or random involuntary movements; and
•difficulty with precise motions, such as writing or buttoning a shirt.

The symptoms of cerebral palsy differ in type and severity from one person to the next, and may even change in an individual over time. Some people with cerebral palsy also have other medical disorders, including mental retardation, seizures, impaired vision or hearing, and abnormal physical sensations or perceptions.

Cerebral palsy doesn’t always cause profound disabilities. While one child with severe cerebral palsy might be unable to walk and need extensive, lifelong care, another with mild cerebral palsy might be only slightly awkward and require no special assistance.

Cerebral palsy isn’t a disease. It isn’t contagious and it can’t be passed from one generation to the next. There is no cure for cerebral palsy, but supportive treatments, medications, and surgery can help many individuals improve their motor skills and ability to communicate with the world.


Now wasnt that informative?! LoL!

I will as always, keep you all posted!
Thank you for reading & visiting our site.

xx
Andrea

Support the Hydrocephalus Association on the "Twit Cause Experience Project"

@HydroAssoc

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Please take a moment of your time and follow the badge's link to "Twit Cause" by "Experience Project" and VOTE for the Hydro Association!! :) With all of our AMAZING Hydrocephalus fans on Twitter we were able to vote our butts off and make it into FIRST PLACE right now! Lets keep that pace!

Noah has a Christmas Wish for Cards!!

Diana Biorkman needs your help in making her son’s wish come true. She has a 5 year old son, Noah, in the last stages of a 2.5 year battle with Neuroblastoma Cancer. The family is celebrating Christmas next week and Noahs request is to get lots of Christmas cards. Please consider sending cards to:


Noah Biorkman
1141 Fountian Viewcircle
South Lyon, MI 48178

We (meaning my family) sent out our card to him on Friday / 11.5.09

Don't forget to send his card out ASAP because this family is celebrating Christmas BEFORE the rest of us! -- next week I believe..

Thanks for reading & I hope we can get this 'lil guy more cards than he ever could've imagined!! <3
Andrea

Say Prayers for a friend in the hospital for a shunt revision please!

Hello all
One of our "followers" to our SW PA group here, Jenn Bechard unfortunately messaged me Saturday and said her shunt hadn't been feeling right & that she wanted to avoid the emergency room at ALL costs & Hopefully make it until Monday A.M. so she could head STRAIGHT to her Neurosurgeon. WELL she DID make it until this morning. 
No one has been updated on her status (as of yet) on whether she's gone into surgery or not - etc.  I'm sure her mother or boyfriend WILL get a post out to us on FaceBook or her website letting us know how she is :)

I've been worried sick about her (although she IS an old pro at this, I want to say this is SOMETHING like her 88th Surgery in her lifetime!) so SHE probably isn't even as worried as I am LOL
But I look up to her SO much, she is a HUGE "spread the word about Hydro" kinda gal, and I know that NOTHING means more to her than the others out there with Hydrocephalus, and the Hydro Association "community" in general. Not to mention a GREAT friend to have when you need someone to talk or vent to. :)

So with ALL of that being said PLEASE everyone say an extra Prayer for her tonight!  I'm SURE she will do just fine but some extra prayers NEVER hurt right?? ;D

& LASTLY, please don't forget to keep spreading the word about our NEW Pittsburgh / SouthWestern PA Hydrocephalus Organization!! My GOAL is to round up a good SOLID 10-20  people through-out theese winter/Holiday months & to hold our first actual Meeting AS SOON as I get that "Solid" group of people (which will hopefully be by the beginning of Spring 2010 - but sooner is NO PROBLEM w/ me!)

We have MANY ideas of things to do AT our meetings, one of the first ones we'd like to do a "friends & families meet & greet" kind of "unformal" thing, as well as going to the extent of having meetings at the NEW Children's Hospital in Pittsburgh & hopefully getting a Neurosurgeon and / or a Neurologist to Speak.

I also have some "activities" planned for during the meetings - I promise, I WILL NOT let you guys down! ;D  I JUST have to get the people FOR the group! so, HELP!! :(  LoL!

Looking forward to making many new friends! Whether they be IN my area or not, I LOVE making friends w/ people from ALL OVER either WITH Hydrocephalus, or parents of Children with it ( like myself for example)

Many ways to contact me!  Leave a comment after ANY of theese posts, or visit my OTHER, more personal blog about my Daughter with Hydro, Cerebral Palsy, & Epilepsy and her daily activities, as well as struggles, at http://andreajunelleb.wordpress.com/

Looking forward to talking with you soon!

3 gals in the Pittsburgh area trying to raise awareness for Hydrocephalus & their new support group!

Hello readers!

I spoke with the leader of Hydrocephalus support groups across America - and it IS official! I'll be working along side 2 other extremely talented ladies Nicky, and Jenna, for our support group!

Nicky had been "in charge" of the original Pittsburgh Support Group which unfortunately, NOT because of her, just never took off the way the 3 of us hoped.. So I guess, HOPING that changing the name would draw in more people, the "small town people" who are intimidated by a 'Pittsburgh group' is what our goal for now would be I guess! Nicky has a 4yr old son who also suffers from Hydrocephalus.

Jenna is another brilliant lady I met not long ago here on the wonderful internet :)  She's only a county away from me, and has a 2yr old son ALSO with Hydrocephalus.  She has MANY great ideas & I can't wait to get down & really start planning an actual MEETING with theese ladies, but FIRST we need YOU - the readers to spread the word! ;D

Any and all that join our group and/or follow our page, feel free to post YOUR (or your loved ones) Hydrocephalus and/or SpinaBifida Story in the comment box, and I'll get it copied & pasted as a post for ALL of the readers. (unless you tell me to do otherwise!)

So this is where we stand for now - please help us get the word out as we're nearing Halloween! Today being the 23rd - we're getting close!

What are YOUR children going to be for Halloween??
My 7yr old wants to be spiderman for the THIRD year in a row LOL!  And Rowie, my dear daughter is going to be a lil Lion, but It's doubtful that I'll be taking her Trick-or-Treating just because of the cold weather.. We BELIEVE she has a weakened immune system because she gets sick SOO very easily.. so we never risk doing ANYTHING that could get her sick.. because ALSO, probably the odds of every 8 out of 10 times she gets sick, she takes a seizure.. and no one wants that!! :(   Thats why her trick-or-treating is still .."up in the air" I guess you'd say! lol :)

We'll be keeping everyone posted!
Have a gr8 weekend!
Andrea
( Nicky & Jenna are here in spirit ;D )  

Something from a new follower.. ;D

One of our recent followers, Diane, has a mother who suffers from Hydrocephalus.  All of our thoughts and prayers go out to you and your mother. :)

Here is HER personal blogspot blog.

http://dj-astellarlife.blogspot.com/

and Diane, if you or your mother ever want to post her "personal" story PLEASE do so in the comment box, and I will copy & paste it into a post for all to read (unless specified otherwise).

Thanks for sharing!

Day 1 - Post 1 - 10.18.09

Hello everyone!  SO great to 'meet' you, lol! Thank you you for visitng out site!  My name is Andrea Beveloque. I live in Uniontown Pa, my hometown that I actually JUST moved back to in July '09 after living in Scottdale Pa with my family ( my 2 awesome children and a great fiance' ) for several years.

Like I said I have two children.  Oldest is Anthony Keith, 7years old, in the middle of his 1st grade school year and doing GREAT! He is very lucky to be in good health, and he's always been.
My younger child however, is Rowan Elizabeth, my miracle baby :)  She is 18months old, and was born with Hydrocephalus due to A.S. - although we did find out about her Hydro while she was still in utero. She was born on April fools day '08! Via planned 'vertical' C-Section (vertical b/c the Dr.'s were concerned about her head size & her breech positioning) After hearing everything from "she'll have no 'quality of life' after birth" to "Her being in my womb was the only thing keeping her alive" to "She could possibly end up to live a perfectly typical life - we have no crystal ball" ..during my pregnancy - we had NO idea what to expect at birth.
I gave birth to her at Magee Women's Hospital in Pittsburgh/Oakland and as soon as her father and I heard them cut that ambilical cord and her take her first breath & cry it was like beautiful music to our ears! So they took her to the NICU and took me to recovery, we only got to see her for about 5 seconds each unfortunately.. But once the epidural wore off and they had my "room" ready I begged if I could PLEASE stop by the NICU before going up to my room so I could see my baby! The lady quickly came back and said that just MOMENTS before I was able to see her, the Magee Women's Hospital NICU called for an ambulance and sent her to the Children's Hospital NICU for 2 reasons, #1 was because Magee Hospital just didn't feel "confortable" taking care of her since I had already had her Neurosurgeon and Neurologist lined up at Children's Hospital from during my pregnancy and #2 the NICU staff thought they heard some "rasping" with her breathing which concerned them greatly. I balled my eyes out ofcourse, because NOW Rowan's father had to go up the block to Children's Hospital and couldn't stay with me (my mother and father had to get back home to take care of my son Anthony) and I wouldn't get to actually SEE my baby girl until the day of her first planned brain surgery (we had it planned w/ her Neurosurg. for 3 days old) She was scheduled to have an ETV/Endoscopic Third Ventriculostomy.
So the nurses that were caring for me at Magee's saw how sad I was, all I did was cry, cry, cry the entire time after I found that she'd been moved to a different hospital so that night, right before bed one nurse said that she would be my nurse again the following day, and that SOMETIMES for SPECIAL CIRCUMSTANCES, as long as the nurse tells the Dr. that the patient is doing well, they'll let you leave temporarily with a "pass", call a taxi for you, and let you go visit your child. This was GREAT news! So ofcourse that next day I'm telling all of the nurses and dr.'s that I felt WONDERFUL lol (which wasn't REALLY a lie, I didn't feel as bad as I'd expected to, just a lil crappy, but it was worth it for a chance to get to get out of there for a few hours and visit my baby!) Sure enough, my nurse kept her promise, got a signed pass from my Dr. and called a taxi for me to go and visit Rowan in the Children's Hospital NICU!  I was only permitted to stay out for 3 hours, but I stayed out for more like 4 lol and I met with the attending Dr. in the NICU, got to give her dad a lil break lol and told them I would be released from Magee's Hospital either the next day, or the day after, so they would be seeing me a lot more soon!
So the day came, I was released, and I rushed up to Children's Hospital to see my Rowie before she went in for her ETV surgery! Then we WAITED.. about 2 hours later her Neurosurgeon came out and said it all went as planned, they also drained some fluid off while they were in there because she just had so much, and her head circumference before the surgery was 45.5cm. and her circumference after the surgery was right around 44cm. He was going to monitor her head size for the next 10 days and as long as it kept getting smaller, then the surgery would be considered a success! UNFORTUNATELY, her head got bigger and bigger instead of smaller and smaller SO on that 10th day he came to me and said he highly reccommended a VP Shunt surgery FIRST thing the next morning. and Thats what we did. Back in the waiting room were Jeremy(her dad) and I terrified and waiting... Once again, doc came out, said it all went well, he wanted to monitor it for ANOTHER 10 days and if her head circumference wouldn't get smaller again, he could turn her shunt "down" to release more fluid out. Which 10 days later was EXACTALLY what he had to do LOL. He took it from it's original starting point of 100, down to 80, which (from how I understood it) meant the tube right off of the pump got that much larger, to let that much more fluid out..
and *knocking on wood* her shunt has been working GREAT ever since! She's had many checkups, head CT's and ultrasounds and they've ALL shown her shunt working very well.
Rowan was ALSO diagnosed with other things though as time went on..
At 5 months she took her first seizure.. Kept her in Children's Hospital for a week doing test after test - came back with NOTHING other than HOPE that it was just a fluke and she wouldn't experience anymore.. a month and a half, another, so she was then diagnosed with Epilepsy and put on an anti-convulsant. She is STILL on that anti-convulsant. She was taking a seizure every 2months or so, but lately it's been more like every 4 months.. But the scariest part about Rowan's seizures are, that they are VERY VERY long in legnth. Her SHORTEST seizure ever was 47 minutes! Doesn't even sound possible does it? --well it is a reality for us.. She seizes and seizes until she gets to our local E.R. and they get her hooked up to an IV where they give her multiple shots of Ativan.. then slowly it stops.. VERY VERY scary to say the LEAST.
THEN - around 6months, after a routine checkup with the Neurosurg. he said her legs and feet didn't look "right" to him, he "suspected" that she either had a minor-to-moderate case of SpinaBifida OR a moderate-to-severe case of Cerebral Palsy. Ordered an MRI to tell us, and sure enough, it was CP. So yes, my daughter suffers from Hydrocephalus, Epilepsy, and Cerebral Palsy. She IS behind developmentally and physically, but to look at her she looks like THE happiest child on the face of the earth! She smiles at everyone, I've NEVER seen her angry, she ONLY cries if she is hungry, needs a diaper change, or is tired.. I mean, she's a lil angel girl!  Whenever we moved in mid-July back to Uniontown, her Early Intervention changed as well. She went from PT 2X a week and OT 1X a week, to Vision Therapy 1X a week, Special Instruction/Developmental Speicalist 1X a week, Speech&Feeding Therapy 1X a week, PT 2X a week, and we're STILL on the hunt for an OT that has an opening to fit Rowie in. She has FIVE different therapists right now, doing FOUR different therapies, FOUR days a week here at our home! Ofcourse I don't mind because it IS whats best for her! I remember seeing a HUGE difference in her just from the OT and PT at our old home in Scottdale, so what I did was started a blog when she started recieving all of theese therapies so I could "track" for myself and my readers her accomplishments, met milestones, struggles, etc. Feel free to visit ANYTIME @  http://andreajunelleb.wordpress.com/

and ALSO, PLEASE, leave YOUR story as a 'comment' !! I LOVE making new friends and hearing others' stories!  If you do not feel comfortable having many people read your story - feel free to email me one-on-one at Rowie2008@verizon.net !

A friend I met two or 3 months ago named Jenn Bechard is a part of the Hydrocephalus Support Group out of Detroit MI and she encouraged me to go to the HA "Walk" in Philadelphia Pa -- when I told her that Philly was a 7 + hour drive for me from where I live, not to mention Rowan HATES long car rides, anything over an hour and a half she starts to get QUITE unhappy lol - that was when she suggested that I either try joining the Support Group listed on HA's website for Pittsburgh Pa, or starting a group of my own. I contacted Nicky Snyder, the lady who is listed on the H.A. website as the 'contact' for Pittsburgh, and she said that there really wasn't much of a support group to join.. that she'd held several meetings, none with great turnouts..
So I did some brainstorming with Jenn and ANOTHER friend I had just recently made at the time who lives in Washington Co. PA named Jenna, and in MY opinion, I think it's just the "TERM" Pittsburgh Support Group that shuns people away.. I know I for one think of only negative things when I think of pittsburgh.. I think of TRAFFIC, I think of BAD NEIGHBORHOODS, and I think "well heck, I don't even live in Pittsburgh, would I 'fit in' with their group?"
That was when I thought of the term "SouthWestern Pa Support group" On the news, in the newspapers, we're ALWAYS being referred to as "The Southwestern Pa area" <- Pittsburgh included in that.  So I think it's a LOT more "welcoming" and I hope all of you out there feel the same :)  Because you are ALL welcome in this group!
With the info I've gotten though from Jenna and Nicky from how poorly the turnouts were for the previous "get togethers" I DO think it'll take us some time to get our BASE built up, but I'm hoping that over the computer, on forums (Gabrielslife.org has a good one, as well as Cafemom.com just 2 off the top of my head) where we can PROMOTE our group during theese winter/holiday months, and then by Spring hopefully have enough that we could hold our first actual MEETING!

I have SO many ideas that have been building up, along with Jenn, Jenna, and Sarah Oxford who have given me pleanty of ideas as well!!
I would LOVE to get "Guest Speakers" to come to meetings - would be nice if a Neurosurgeon could come once, a Neurologist, Therapists, etc.  The more knowledge we ALL have, the better our lives, and the lives of our Children will be. :)

So thats all for today!!
PLEASE post comments, email me, visit my daughters blog about her Journey with Hydro, CP, & Epilepsy, tell any friends you have that would be interested about this site and the up and comming SouthWesternPA support group!
Do whatever you'd like to do, to do a part in the making of this - but I'm SUPER excited, and can't wait to start making MORE friends in the area that go through the same struggles and activities that my family goes through!

POST A COMMENT! ;D  ..TELL YOUR STORY!
Thank you for reading mine!

Sincerely until next time,
Andrea, Rowie, and family :)