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
Sunday, December 27, 2009
Saturday, December 19, 2009
☃ 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
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
Thursday, December 10, 2009
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
Thank you all for reading, & I hope Jennifer finds a good, long-term friend to talk to! ღ
xo
Aj
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