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Old 11-20-2009, 07:57 PM   #1186
Dave JP
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Quote:
Originally Posted by KneeDrachen
For those of you Dads with Daughters, when you see your daughter next, hug her tightly for she is truly a gift.
You bet, bro.

Juliet looks like a real sweetie. I hope all works out grand on your end.

Dave
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Old 11-20-2009, 09:13 PM   #1187
Wout67
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knee;

Please keep us up to date on how your angel is doing.
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Old 11-21-2009, 04:13 AM   #1188
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Quote:
Originally Posted by KneeDrachen
I've anxiously wanted to post to this thread for quite some time now. My daughter, Juliet, was born on 9/3/2009 at full term. We knew she had a congenital kidney problem, but had no other anticipated problems. At 9 days of life, I was holding her asleep in my arms when she turned blue and stopped breathing, twice. I revived her and we went to the ER;after evaluation we were discharged from the ER with no known diagnosis. Two days later at 11 days of life, I was in the hallway of our house when I heard my wife scream and ran into the room to see her holding my daughter, blue, limp and lifeless. I was able to revive her twice again and she was admitted to the Pediatric ICU for 3 days. The doctors performed a 12 hour PCG (pneumocardiogram) and she had 164 events of apnea (no breathing) and 58 events of periodic breathing. We were discharged with no known etiology but sent home on a life support/apnea/bradycardia monitor and told to keep a watch on her until a diagnosis could be made. My daughter turned 11 weeks yesterday and has had 5 ER visits and 3 PICU admissions. She has been diagnosed with apnea, GERD, renal dilation, nonspecified abnormal brain wave activity, Sandifer's Syndrome, and now her airway has begun to collapse when she inhales, at times we only know she is breathing because we hear a small squeak and her monitor hasn't gone off. We are scheduled to be seen at the Airway Center at the Children's Hospital Of Philadelphia on November 30th to find out what the next step will be, airway revision surgery or a tracheotomy.
I'm a first time father and read this thread anxiously awaiting the arrival of our child; when she was born and we learned she was female, I thought of this thread and hoped one day to take her on a ride; now I have to be concerned if she is going to wake from her next nap or if she stops breathing if I can get her going again. I leave the house each morning for work and wonder if it will be the last time I will see her again. For those of you Dads with Daughters, when you see your daughter next, hug her tightly for she is truly a gift. I've attached a picture of her below with her pH probe in place as well as the video EEG leads on her head. Ride Safe.
I've asked my CMA Chapter to add you and your family to their pray list. I sincerely pray for the best.
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Old 11-21-2009, 07:26 AM   #1189
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Quote:
Originally Posted by agricon
Here's a picture of my future riding buddy. At the moment its restricted to riding up and down the drive but I can see that changing soon.
Slightly off topic, nice bike mate, is that original colour scheme? Its one I've not seen before I dont think those colours were originally for uk market.

By the way your girls gonna be a real heart breaker
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Old 11-21-2009, 08:21 AM   #1190
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Quite obviously this is bigger than anything else here. All the best from the northwest. It's only an instant in time when they grab hold of your heart, and they never let go. It sounds like Juliet has great parents. Thoughts and prayers.

Quote:
Originally Posted by KneeDrachen
I've anxiously wanted to post to this thread for quite some time now. My daughter, Juliet, was born on 9/3/2009 at full term. We knew she had a congenital kidney problem, but had no other anticipated problems. At 9 days of life, I was holding her asleep in my arms when she turned blue and stopped breathing, twice. I revived her and we went to the ER;after evaluation we were discharged from the ER with no known diagnosis. Two days later at 11 days of life, I was in the hallway of our house when I heard my wife scream and ran into the room to see her holding my daughter, blue, limp and lifeless. I was able to revive her twice again and she was admitted to the Pediatric ICU for 3 days. The doctors performed a 12 hour PCG (pneumocardiogram) and she had 164 events of apnea (no breathing) and 58 events of periodic breathing. We were discharged with no known etiology but sent home on a life support/apnea/bradycardia monitor and told to keep a watch on her until a diagnosis could be made. My daughter turned 11 weeks yesterday and has had 5 ER visits and 3 PICU admissions. She has been diagnosed with apnea, GERD, renal dilation, nonspecified abnormal brain wave activity, Sandifer's Syndrome, and now her airway has begun to collapse when she inhales, at times we only know she is breathing because we hear a small squeak and her monitor hasn't gone off. We are scheduled to be seen at the Airway Center at the Children's Hospital Of Philadelphia on November 30th to find out what the next step will be, airway revision surgery or a tracheotomy.
I'm a first time father and read this thread anxiously awaiting the arrival of our child; when she was born and we learned she was female, I thought of this thread and hoped one day to take her on a ride; now I have to be concerned if she is going to wake from her next nap or if she stops breathing if I can get her going again. I leave the house each morning for work and wonder if it will be the last time I will see her again. For those of you Dads with Daughters, when you see your daughter next, hug her tightly for she is truly a gift. I've attached a picture of her below with her pH probe in place as well as the video EEG leads on her head. Ride Safe.
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Old 11-21-2009, 12:03 PM   #1191
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Knee,
Damn,Here's believing the best will happen.............

(and I did text (she's working,can't take calls) my 19 y.o. and told her ILY..)
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Old 11-21-2009, 12:30 PM   #1192
Fireman1000
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Prayers with you Knee. She's is beautiful.
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Old 11-21-2009, 02:01 PM   #1193
inire
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Quote:
Originally Posted by KneeDrachen
For those of you Dads with Daughters, when you see your daughter next, hug her tightly for she is truly a gift. I've attached a picture of her below with her pH probe in place as well as the video EEG leads on her head. Ride Safe.
True That. Thoughts and love to you and yours.

She's cute, too.

My second, a boy, was born last Sunday. I watch him like a hawk.
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Old 11-21-2009, 02:09 PM   #1194
Uglyprimate
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Quote:
Originally Posted by KneeDrachen
To think just an hour ago, I was complaining about mine getting a "D" in Geometry.

Life lessons quickly trivialize themselves.

Every single moment is precious.

Daddy's special little girl. She knows her Daddy loves her. It shows in her recognition.

Stay strong my friend.
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Old 11-21-2009, 02:55 PM   #1195
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Quote:
Originally Posted by KneeDrachen
For those of you Dads with Daughters, when you see your daughter next, hug her tightly for she is truly a gift.
AMEN BRUDDAH! I pray to God almighty that your gift be posting to this thread with you and the girl perched on your scoot. And keep us posted too.


Now here's me and my gift rollin' down Hwy 123 in beautiful Arkansas. I love that little smirky smile underneath that helmet. Lookout world, she's only three years out from her moto-license.

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Old 11-21-2009, 03:19 PM   #1196
Cricket 101
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Knee,

Best of luck to you and your beautiful little girl. Children's Hosp of Philly (CHOP) is a great place to be. I work in genetics research at Children's Hosp of WI and we collaborate with them on a regular basis. They're leaders in children's medicine and rare conditions. I hope they'll be able to give you some answers as well as the best of care.

Our thoughts and prayers are with you.

Cricket and family
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Old 11-21-2009, 04:34 PM   #1197
KneeDrachen
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I thank you all for your well wishes and hopes and prayers. Life has been turned upside down for us since her health began to deteriorate; having her on a monitor has changed the way we do everyday things, i.e. when driving on the highways, we drive in the right lane because if her monitor goes off because she has stopped breathing or her heart rate drops too low (her latest party trick) we have to pull over immediately and begain resuscitation efforts. For those of you who have driven New Jersey's highways and byways, you know what traffic is like here; I don't want to waste precious seconds trying to get to the shoulder whereas if I was in the right lane to begin with, I can shave precious seconds off of a life saving attempt.

Prior to an on-duty injury that resulted in 65% loss of function of my left arm and hand (as well as a botched anethesia event that left me with a VERY foggy memory of my first 27 years of life, I'm 30 now)I was a firefighter/paramedic in an urban area until I transferred out to a more suburban setting after getting shot at for the last time. Most calls never bothered me, it was really only the child abuse and SIDS calls that got me. After I left emergency services I am now employed by the US Army in a deployable position; I've deployed once overseas and am trying to get a spot where I don't have to worry about leaving home anymore. I still have the nightmares from the calls I've encountered and since my daughter's health has deteriorated, every time she stops breathing and I work on getting her going again all of those pediatric calls come back to me. It's a harrowing experience that leaves me unable to sleep for a few night afterwards due to the nightmares and anxiety that follow. I swore after I had my first pediatric DOA pronouncement that when I had children, I would never, EVER be one of those parents burying their own child; I now find myself facing that as a very real possibility every day of my life.

Juliet is a fighter, she's been through a lot but we don't know if she can keep fighting without divine intervention or some sort of medical intervention/miracle. I've never been a man of faith, years in the trenches of emergency services led me to be believe I was way too pragmatic for faith, I find myself seeking solace at every corner for any glimmer of hope that Juliet will get better.

We have accelerated our lives a bit, we start to celebrate holidays sooner rather than later because we don't know if we will be home for the holidays or like usual, in a hospital. We also keep the fear in the back of our heads that she may not make the holiday or her first may be her last. I've been through some serious stuff in my career, from bullets whizzing at me, buildings falling around while they burn and I've been scared to the point of an adrenaline rush fear; this, this is an all enveloping inky-black cloud of anxiety, desperation, depression and fear that is something I've never even managed existed that wraps around you like a boa constrictor tightening its squeeze and won't let go. The fact that I personally can not do anything for her to get her better is what pains me, I've heard other fathers say they would do anything for their child; I swore to lay my life down to save another person's life but the amount of dedication and selfless love that comes with being a father is beyond my wildest imagination. It is my hope and dream that one day she will be old enough to look back and realize this without it being said.

Since I've received some requests from people here to keep them updated on Juliet's journey, I will be starting a CaringBridge website so that way I don't hijack this thread; that's not my style and I beleive this place should be a celebration of our relationships with our daughters and not a painful reminder of how fragile life really is. As soon as it is up I'll post a link up. In as much, for those of you addicted to Facebook, I have frequent updates on her there as well as well as a TON of pictures for those that feel like watching her hopefully get better. My name is Alexander Dunn, you'll know it is me due to the "network" of Jersey Shore,NJ being listed on my name when you do a search. If you decide to seek me out, just shoot me a message that you're from ADV so I add you, I tend to ignore requests from people I don't know.

Below I've attached a picture, the picture is of Juliet and I in her hospital crib, many times we can't hold her due to the types of testing they perform plus the video EEGs require her to be in the field of view of a camera which is focused on the crib. We do what we can to bond with her and entertain her when we can't hold her albeit it is a heartbreaking experience to not be able to pick up a crying infant when they look up wiith you with tear-laden pleading eyes.

I have a video that my sister created and posted in Facebook, however I am having a problem linking to it. . .The video is a work in progress by my sister (she is the skinny one in the video holding Juliet in the hospital chair, and sorry guys, she's taken). My sister avoids the fact that Juliet has some serious medical issues and as such, avoided as many pictures as possible of Juliet hooked up to her equipment. Most of the time she is just wearing her monitor vest under her clothing and we try to hide the monitor whenever possible, you'll notice in her Halloween costume the wires running out of the bottom. As well, you'll notice in some of the pictures some scabs on her head, when her video EEG was performed in October the tech didn't wait for the solvent to dissolve the glue, in the process of electrode removal she ripped chunks of her scalp out, down to the connective tissue. After a serious tongue lashing I proceeded to remove the rest of the electrodes without incident after being taught how to do it. The wounds have mostly healed up and the scabs are gone but there's still a little scarring. Sucks.

I want to again express my heartfelt thanks to everyone here and will post the CaringBridge link up here once the site is up and running. Sorry for the thread hijack. . .Ride Safe.

Alex

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Old 11-21-2009, 06:26 PM   #1198
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Alex - you are one impressive human being. I wish you good luck.
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Old 11-21-2009, 06:31 PM   #1199
Wout67
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thanks for the update, knee. Hoping and praying for the best for all of you.
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Old 11-21-2009, 07:23 PM   #1200
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Daughters are precious

Alex, thanks for sharing with us your poignant story. As a new first-time father myself, I'm keeping your family in my prayers.
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