Update Tuesday
Seven days in Chez Hosptial is enough for us, thanks! After getting caffiene in her IV yesterday as a diagnositic tool for the CSF leak (Cerebial Spinal Fluid), she responded really well and was able to sit up and enjoy her visitors. It was uncanny how well she responded, like she was 100%. When it wore off, she was tired and in pain again but we now feel even more confident we are on the right track.
Today she’ll have a sedated procedure where they’ll draw blood and put it directly into the spinal column (called a Spinal Patch) and hopefully the blood will clot around the hole and aid in healing. It sounds like if all goes well, we may even go home later today. I am not telling her this yet.
Mike has been working on changing her room from upstairs to downstairs and he had some friends over yesterday to move the big furniture. It will be nice to have her so close to the bathroom, not to mention she won’t have to climb stairs or a bunk bed to lay down!
I’m excited by the prospect to go home and return to normal, but also a little scared. I worry about not being able to give any of the girls the attention they will no doubt require. That and trying to work on the upcoming summer sessions… Can you see me sitting here, trying to simply breathe in and out? That is about as much as I can do right now. The rest will come, right? As long as I keep breathing?
The PMs, emails, prayers and good juju have all made me feel as if I am being held in your collective hands, supported. I haven’t felt this supported in my adult life (both online and IRL) and I can’t tell you how much it means to both me and our family. I thank you from the soles of my feet!
This forum is amazing and I look forward to jumping back in just as soon as things normalize.
Thinking of you
Hi Jesse,
I just read about the tough time your daughter and family are going through. Along with the rest of the Dgrin family I send you my best wishes and a big thank you for sharing your experience photographically. A sick child is so traumatizing for the parents! Take good care of yourself too as you are needed more than ever.
Woohoo!!!! I'm so glad she's home!!! Get some rest!!!!
My dog and I used to do therapy dog visits at a local nursing home. It was fun and to see peoples' expressions brighten up when the interacted with your dog was truly special.
Sorry for the late response - I haven't been active and only just found this today. I am glad to know you are home, and things look to be on the road to recovery. I have a son with diabetes (type 1) and 7 years after diagnosis, it is still a challenge. I know of the fear that you must have, and of the coping that you will need going forward. His diabetes is not well controllable, and he has had a few hypoglycemic episodes that lead to confusional migraines. We have had emergency trips and MRIs. I have ridden the rollercoaster, and want to offer you my support - please know that you can contact me if you want.
Take care, indiegirl. And take care of your little one - and of the others.
Jesse, I'm so glad to hear your daughter is on the road to recovery and that you're all home now. You and your family will be in my families thoughts and prayers.
She's back to normal, that amazing girl. I'm working on processing the past several days and continue to be inspired by the love and support from my real-life and cyber communities (like my new dgrin family!)
Just saw this...
wishing you and your family that all works out for the best - your photos were inspirational and touching at the same time...
frankly, I think they're amazing and so is your daughter - her spirit certainly shines through. glad to hear you're back home in more comfortable surroundings..
I just discovered this thread this morning. Heck, I was wiping tears just reading through it! Love is the greatest healer of all, and it is obvious that there is plenty of it amongst (is that a word?) your family and friends; not to mention the outpouring of support from the dgrin crowd!
Thank you for letting us share this intimate part of your life - the images and words capture so much . . . and I think they will prove useful in helping everyone process the experience.
I've found that being behind a lens tends to separate me from the experience, but that doesn't seem to be case here at all, though I suspect your photographer's eye helped you see some things differently. My hat is off to you as a photographer and as a mom!
As an aid in the recovery process, I would suggest you check out CranioSacral Therapy, if you haven't already. It's very gentle, great for kids, and hones in on the system that appears to be affected in your daughter. Many health care practitioners are trained in it, possibly even some at the hospital. Here is a link if you would like to find out more: http://www.iahe.com/html/therapies/cst.jsp
The medical world can be a very scary place, and I'm glad that this story has a happy ending. Isn't it amazing what can come out of us when the need arises?!
I'm just now stumbling upon this thread - thank you so much for sharing this. I work in a children's hospital taking care of children such as your daughter. I strive to make the kids and families as comfortable as possible, but it's always scary for them - it's great to have such a great portrayal of things from your perspective. Your daughter is lucky to have you. I'll keep your daughter in my thoughts and prayers.
What a beautiful little girl! I'm so glad things have gone well and she is back home with you. Great job on the photos and the story.
Dana
** Feel free to edit my photos if you see room for improvement.** Use what talents you possess: the woods would be very silent if
no birds sang there except those that sang best. ~Henry Van Dyke
I wanted to post an update about Miss V for all of you who took the time to send us your well-wishes and healing vibes.
After her discharge from the hospital, she had a series of tests this summer. Thankfully, all of the tests showed normal function and no physical abnormalities in her "plumbing." This was a double-edged sword because although things were "normal," her infection and lack of symptoms wasn't normal.
We had a sit-down with her doc last week and she said she suspected V was a pee-dancer. "Does she hold her pee until the very last minute and dance around?"
"You mean the Pee Pee Dance? The activity has a name in our house!" V has a fear of public bathrooms and dislikes going pee in general, so she'll hold it for hours. Her doc thinks she's stretched her bladder out and she's lost the sensation of going when it's not an emergency. She must also leave a fair bit in her bladder each time and that is what might be causing the infections.
It makes sense to me. The girl is just too busy to be bothered sometimes! She's on an every-two-hours potty break now, to try and get her bladder to shrink. She's also on daily antibiotics to prevent another infection during this healing process. I'm not crazy about the antibiotics, but weighing the pro's and con's, I'll take them over another hospital trip.
It is sure nice to have an explanation that makes sense and a course of action. It sounds like you are well on your way toward a full recovery which, at least from this end of the keyboard, is a big relief.
My boy also gets too busy to go and dislikes public bathrooms but clearly not to the same degree. After some time we figured out his dislike of public bathrooms was because of the loud sound of the toilet flush, so now we send him out of the bathroom before flushing which has helped quite a bit.
Automatic toilets (which she calls "bionic toilets") are the great Evil. She quivers, shakes and bursts into tears. Poor girl. We're working on it...
I have this problem with my own daughter, including today. Crippled up in pain from having to go, she still couldn't as the silly automatic thing kept flushing while she was trying. After her becoming hysterical I guessed the best course of action was to just get out of walmart and home as quick as we could, even if it meant an outfit change once we got there.
I have this problem with my own daughter, including today. Crippled up in pain from having to go, she still couldn't as the silly automatic thing kept flushing while she was trying. After her becoming hysterical I guessed the best course of action was to just get out of walmart and home as quick as we could, even if it meant an outfit change once we got there.
On the way to the ambulance, I grabbed my camera. This is a direct result from my participation in this forum and in this challenge. My outlook on the world has changed and I see the power in documenting both the beautiful and the scary, I see how I can tell my story in pictures in a new way. Not only that, I'm learning so much here that I was able to use some new techniques to capture what I was seeing more effectively.
I want to thank you for inspiring my heart to take risks and look at the world with new eyes. Even if I never even place in this challenge, I've won.
These paragraphs touch my heart; you find an easy way to show your involvement, you lead others, and as you clearly point out, you have an entire life both away from a camera and this 'daily grind'!
I, for one, am proud of you...
In a post above, Shay also found some very high praise for your medical documentation of what is clearly a soulful plight, both for you and for your daughter.
Thanks for posting such wonderful shots to us...
As we all know, LPS is only one of life's many challenges!
WELL Done, Jesse ~ may both you, your daughter, and the other kids come out of this test stronger, more pliant, and wiser...
POST MORTEM
Read the post above after composing a response. Its indeed good to hear things are 'normal'...
Joe
[FONT="]As You Think, So Shall You BE... Rumi, 13th Century Persian Poet
Very moving story... Touches me very deeply. Seems that this little one has a lot of spunk in her...
Hope she will be able to put her adventure into context... The pictures could help her... Time to make a nice scrapbook! Well done for her and you!
I only found this thread this morning and my thoughts and prayers to all of you. What a relief that everything seems devoid of long-term concerns!
Your images are beautiful and very moving. My daughter had some health concerns when she was little, but I didn't have a camera at that time. My middle son was hospitalised for 4 days earlier this year and I didn't involve the camera. Now I wish that I did.
He had a facial swelling - the good old gum - and looked like the elephant man. Beautiful face one day - swollen like a balloon the next.I looked at his face as we prepared to go to the hospital, looked at the cam, he looked at my face looking at the cam and just shook his head. I abided by that as he was 12 at the time and it seemed respectful. They were really concerned about this infection as it was so close to his eye. Thankfully, 4 days and he was sprite, back to normal and minus one tooth. There are so many reasons I wished I had documented it as you have done here:-
He was SO brave
It was a solid record of his recovery
He had this whole 'perfect manner' thing going on in the hospital and a few favorite nurses.
Spending 4 days with him without the other 2 children was special in itself
The list goes on and whilst we both share those memories between us, it would definitely be wonderful to share it in imagery.
Thanks for sharing this. You have provided something very beautiful for you all I believe
Comments
IndieMom and IndieDaughter, wishing you all well!!!
moderator of: The Flea Market [ guidelines ]
Such a frightening ordeal.
For all of you. glad things are better.
You may have discovered your photographic "niche" ! Photojournalism:D
Wishing the best for the Indiefamily.
Jill
Seven days in Chez Hosptial is enough for us, thanks! After getting caffiene in her IV yesterday as a diagnositic tool for the CSF leak (Cerebial Spinal Fluid), she responded really well and was able to sit up and enjoy her visitors. It was uncanny how well she responded, like she was 100%. When it wore off, she was tired and in pain again but we now feel even more confident we are on the right track.
Today she’ll have a sedated procedure where they’ll draw blood and put it directly into the spinal column (called a Spinal Patch) and hopefully the blood will clot around the hole and aid in healing. It sounds like if all goes well, we may even go home later today. I am not telling her this yet.
Mike has been working on changing her room from upstairs to downstairs and he had some friends over yesterday to move the big furniture. It will be nice to have her so close to the bathroom, not to mention she won’t have to climb stairs or a bunk bed to lay down!
I’m excited by the prospect to go home and return to normal, but also a little scared. I worry about not being able to give any of the girls the attention they will no doubt require. That and trying to work on the upcoming summer sessions… Can you see me sitting here, trying to simply breathe in and out? That is about as much as I can do right now. The rest will come, right? As long as I keep breathing?
The PMs, emails, prayers and good juju have all made me feel as if I am being held in your collective hands, supported. I haven’t felt this supported in my adult life (both online and IRL) and I can’t tell you how much it means to both me and our family. I thank you from the soles of my feet!
This forum is amazing and I look forward to jumping back in just as soon as things normalize.
More later.
I think you may be right!
Hi Jesse,
I just read about the tough time your daughter and family are going through. Along with the rest of the Dgrin family I send you my best wishes and a big thank you for sharing your experience photographically. A sick child is so traumatizing for the parents! Take good care of yourself too as you are needed more than ever.
http://artbysuni.smugmug.com/
"IT'S ALL ABOUT THE LIGHT"
Final set of images are up.
(((love to my dgrin friends)))
Now I'm going to sleep, hopefully for many hours in a row.
Jesse
Welcome home and thank you for the update!
My dog and I used to do therapy dog visits at a local nursing home. It was fun and to see peoples' expressions brighten up when the interacted with your dog was truly special.
http://lrichters.smugmug.com
[SIZE=-1]It's nice to be important, but it's more important to be nice. - John Lennon.[/SIZE]
Sorry for the late response - I haven't been active and only just found this today. I am glad to know you are home, and things look to be on the road to recovery. I have a son with diabetes (type 1) and 7 years after diagnosis, it is still a challenge. I know of the fear that you must have, and of the coping that you will need going forward. His diabetes is not well controllable, and he has had a few hypoglycemic episodes that lead to confusional migraines. We have had emergency trips and MRIs. I have ridden the rollercoaster, and want to offer you my support - please know that you can contact me if you want.
Take care, indiegirl. And take care of your little one - and of the others.
Ann
PS: Great photos!
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Jesse, I'm so glad to hear your daughter is on the road to recovery and that you're all home now. You and your family will be in my families thoughts and prayers.
Also, the photos are great!
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Thank you again, from the bottom of my toes.
Jesse
wishing you and your family that all works out for the best - your photos were inspirational and touching at the same time...
frankly, I think they're amazing and so is your daughter - her spirit certainly shines through. glad to hear you're back home in more comfortable surroundings..
Best wishes...Keith
Dear Jesse
I just discovered this thread this morning. Heck, I was wiping tears just reading through it! Love is the greatest healer of all, and it is obvious that there is plenty of it amongst (is that a word?) your family and friends; not to mention the outpouring of support from the dgrin crowd!
Thank you for letting us share this intimate part of your life - the images and words capture so much . . . and I think they will prove useful in helping everyone process the experience.
I've found that being behind a lens tends to separate me from the experience, but that doesn't seem to be case here at all, though I suspect your photographer's eye helped you see some things differently. My hat is off to you as a photographer and as a mom!
As an aid in the recovery process, I would suggest you check out CranioSacral Therapy, if you haven't already. It's very gentle, great for kids, and hones in on the system that appears to be affected in your daughter. Many health care practitioners are trained in it, possibly even some at the hospital. Here is a link if you would like to find out more: http://www.iahe.com/html/therapies/cst.jsp
The medical world can be a very scary place, and I'm glad that this story has a happy ending. Isn't it amazing what can come out of us when the need arises?!
Blessings, Dane
Celebrating the essence of Nature, the Human Spirit, and the Divine Presence in all
http://www.drdane.smugmug.com or:
http://www.inner-light-images.com
Basking in the shadows of yesterday's triumphs'.
Catapultam habeo. Nisi pecuniam omnem mihi dabis, ad caput tuum saxum immane mittam
http://www.mcneel.com/users/jb/foghorn/ill_shut_up.au
** Feel free to edit my photos if you see room for improvement.**
Use what talents you possess: the woods would be very silent if
no birds sang there except those that sang best.
~Henry Van Dyke
After her discharge from the hospital, she had a series of tests this summer. Thankfully, all of the tests showed normal function and no physical abnormalities in her "plumbing." This was a double-edged sword because although things were "normal," her infection and lack of symptoms wasn't normal.
We had a sit-down with her doc last week and she said she suspected V was a pee-dancer. "Does she hold her pee until the very last minute and dance around?"
"You mean the Pee Pee Dance? The activity has a name in our house!" V has a fear of public bathrooms and dislikes going pee in general, so she'll hold it for hours. Her doc thinks she's stretched her bladder out and she's lost the sensation of going when it's not an emergency. She must also leave a fair bit in her bladder each time and that is what might be causing the infections.
It makes sense to me. The girl is just too busy to be bothered sometimes! She's on an every-two-hours potty break now, to try and get her bladder to shrink. She's also on daily antibiotics to prevent another infection during this healing process. I'm not crazy about the antibiotics, but weighing the pro's and con's, I'll take them over another hospital trip.
That's the story! Happy endings are awesome.
My boy also gets too busy to go and dislikes public bathrooms but clearly not to the same degree. After some time we figured out his dislike of public bathrooms was because of the loud sound of the toilet flush, so now we send him out of the bathroom before flushing which has helped quite a bit.
I have this problem with my own daughter, including today. Crippled up in pain from having to go, she still couldn't as the silly automatic thing kept flushing while she was trying. After her becoming hysterical I guessed the best course of action was to just get out of walmart and home as quick as we could, even if it meant an outfit change once we got there.
My kids are long past the "Pee Pee Dance". They're both teenagers and now our biggest problems are associated with hormones!
Very happy for you, hope it works out well.
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You are regarded as a leader here; you make some of the glue which makes this such a wonderful experience!
Then, one day again a bouncy kid with too much enthusiasm, too much of her mother in her...
These paragraphs touch my heart; you find an easy way to show your involvement, you lead others, and as you clearly point out, you have an entire life both away from a camera and this 'daily grind'!
I, for one, am proud of you...
In a post above, Shay also found some very high praise for your medical documentation of what is clearly a soulful plight, both for you and for your daughter.
Thanks for posting such wonderful shots to us...
As we all know, LPS is only one of life's many challenges!
WELL Done, Jesse ~ may both you, your daughter, and the other kids come out of this test stronger, more pliant, and wiser...
POST MORTEM
Read the post above after composing a response. Its indeed good to hear things are 'normal'...
[FONT="]As You Think, So Shall You BE... Rumi, 13th Century Persian Poet
Award-Winning Photography, Workshop Instructor, Storyteller, Writer
[/FONT][FONT="]Blog: [/FONT][FONT="]Pathways of Light[/FONT]
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Hope she will be able to put her adventure into context... The pictures could help her... Time to make a nice scrapbook! Well done for her and you!
http://photocatseyes.net
http://www.zazzle.com/photocatseyes
I only found this thread this morning and my thoughts and prayers to all of you. What a relief that everything seems devoid of long-term concerns!
Your images are beautiful and very moving. My daughter had some health concerns when she was little, but I didn't have a camera at that time. My middle son was hospitalised for 4 days earlier this year and I didn't involve the camera. Now I wish that I did.
He had a facial swelling - the good old gum - and looked like the elephant man. Beautiful face one day - swollen like a balloon the next.I looked at his face as we prepared to go to the hospital, looked at the cam, he looked at my face looking at the cam and just shook his head. I abided by that as he was 12 at the time and it seemed respectful. They were really concerned about this infection as it was so close to his eye. Thankfully, 4 days and he was sprite, back to normal and minus one tooth. There are so many reasons I wished I had documented it as you have done here:-
He was SO brave
It was a solid record of his recovery
He had this whole 'perfect manner' thing going on in the hospital and a few favorite nurses.
Spending 4 days with him without the other 2 children was special in itself
The list goes on and whilst we both share those memories between us, it would definitely be wonderful to share it in imagery.
Thanks for sharing this. You have provided something very beautiful for you all I believe
Best wishes