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 )
Friday, October 23, 2009
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!
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!
Sunday, October 18, 2009
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 :)
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 :)
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