Here is some video of Noa walking - I know there are some of you who will be amazed. It's taken a long time to get to this place, but Noa really loves to be up on her feet now. I think she gets that its a big-kid thing.
Friday, October 31, 2008
HAPPY HALLOWEEN!
For those of you who asked for more photos of Noa, the Halloween Parade in our building offered the perfect photo op (I know it doesn't look like much, that's just because we're bringing up the rear at this point).
Noa loved wearing her skunk costume and all the excitement around the parade - she really got that it was a special event, and she's kind of a party-girl. She did a lot of walking - which was really an enormous effort for her. We were so proud of her! She even got a bag of candy! She shook it once, decided it was a broken toy and threw it away.
With all the craziness around getting ready for the big trip to Duke, it was a terrific, fun break for all of us - a big thanks to Melissa who was a huge part of the Halloween fun, and she took these great photos!
We leave for Duke on Sunday afternoon - and yes, we'll be trying to get to the airport in the midst of the NY Marathon!
We meet with the staff at Duke on Monday morning for a bit. The procedure itself is scheduled for 11:00am Tuesday morning and should take about 2 hours. If all goes well we'll be back in NYC by Wednesday afternoon!
We are tremendously grateful for all the prayers, good vibes, the salt over the shoulders, the white healing light, etc... Your good wishes mean so much to us.
We thank you thank you thank you, and Noa sends big bubbly belly laugh your way!
For those of you who asked for more photos of Noa, the Halloween Parade in our building offered the perfect photo op (I know it doesn't look like much, that's just because we're bringing up the rear at this point).
Noa loved wearing her skunk costume and all the excitement around the parade - she really got that it was a special event, and she's kind of a party-girl. She did a lot of walking - which was really an enormous effort for her. We were so proud of her! She even got a bag of candy! She shook it once, decided it was a broken toy and threw it away.
With all the craziness around getting ready for the big trip to Duke, it was a terrific, fun break for all of us - a big thanks to Melissa who was a huge part of the Halloween fun, and she took these great photos!
We leave for Duke on Sunday afternoon - and yes, we'll be trying to get to the airport in the midst of the NY Marathon!
We meet with the staff at Duke on Monday morning for a bit. The procedure itself is scheduled for 11:00am Tuesday morning and should take about 2 hours. If all goes well we'll be back in NYC by Wednesday afternoon!
We are tremendously grateful for all the prayers, good vibes, the salt over the shoulders, the white healing light, etc... Your good wishes mean so much to us.
We thank you thank you thank you, and Noa sends big bubbly belly laugh your way!
Sunday, October 26, 2008
Thanks Everyone!
Just a quick post to thank all of you who responded so warmly to The Land of Noa blog, and sent your well wishes, prayers, pinches of salt, etc...
Wow! We are truly blessed to have such supportive friends and family members.
Thanks and Love to you all!
Jeni, Ben & Noa
Wow! We are truly blessed to have such supportive friends and family members.
Thanks and Love to you all!
Jeni, Ben & Noa
Friday, October 24, 2008
Stem Cells....
Okay, so on to this thing at Duke. I actually heard about this procedure on the world news - they were doing it for kids with Cerebral Palsy, but I thought they might consider Noa since her condition, like CP, was caused by tramatic brain injury. The doctor they interviewed was at Duke so I just reached out her - this was about nine months ago.
The program is only open to kids that have their umbilical cord blood banked. We did this with Noa mainly because she is adopted, and that when you don't have a lot of possible organ donors tramping around your house you think of these things.
The process is actually surprisingly simple. They insert an IV, transfuse the stem cells into her arm, and let them do their work. The assumption is that the cells know where they are needed and they go there. They have had some cases in which they have had wonderful success, and others in which is appears to make no major difference at all. We just don't know what to expect.
We don't expect this to be a magic wand, or a cure. We hope that it will bring some improvement in one or more areas. We just don't know. There is very little about this on web because it's a new procedure - but here is some stuff about two of the kids who are real success stories:
http://www.cnsfoundation.org/site/News2?page=NewsArticle&id=7331
http://articles.latimes.com/2008/apr/07/health/he-cpalsy7
And here are some great youtube stories of kids - and the Duke program. Remember, these are the most dramatic successes. We don't know how Noa will do. We're trying to keep some balance - we'll hope for the best, but understand that we don't get to decide what the best will be.
http://www.youtube.com/watch?v=ITRAchU2C0I
http://www.youtube.com/watch?v=PT4ydxomnQ0&feature=related
http://www.youtube.com/watch?v=Gr0OOtvKU0A&feature=related
The program is only open to kids that have their umbilical cord blood banked. We did this with Noa mainly because she is adopted, and that when you don't have a lot of possible organ donors tramping around your house you think of these things.
The process is actually surprisingly simple. They insert an IV, transfuse the stem cells into her arm, and let them do their work. The assumption is that the cells know where they are needed and they go there. They have had some cases in which they have had wonderful success, and others in which is appears to make no major difference at all. We just don't know what to expect.
We don't expect this to be a magic wand, or a cure. We hope that it will bring some improvement in one or more areas. We just don't know. There is very little about this on web because it's a new procedure - but here is some stuff about two of the kids who are real success stories:
http://www.cnsfoundation.org/site/News2?page=NewsArticle&id=7331
http://articles.latimes.com/2008/apr/07/health/he-cpalsy7
And here are some great youtube stories of kids - and the Duke program. Remember, these are the most dramatic successes. We don't know how Noa will do. We're trying to keep some balance - we'll hope for the best, but understand that we don't get to decide what the best will be.
http://www.youtube.com/watch?v=ITRAchU2C0I
http://www.youtube.com/watch?v=PT4ydxomnQ0&feature=related
http://www.youtube.com/watch?v=Gr0OOtvKU0A&feature=related
What is a Pre Natal Stroke and Other Questions I Get Asked...
People ask a lot about Noa's condition. It's difficult because she really doesn't have a condition that has one name - and most people haven't heard of a pre-natal stroke. On top of that, Noa's stroke was unusual because it was quite extensive and bi-lateral, meaning that both hemispheres (or sides) of the brain were affected. Often in a stroke (at any age), one hemisphere is affected and so one side compensates for the other. This is not the case for Noa. She has damage to the temporal, occipital and parietal lobes bilaterally.
Also, because Noa had her stroke before birth, it's not a matter of RE-learning things that were lost, as it is in adult strokes, it is a matter of learning for the first time. Luckily, the brain is very plastic, especially early in life so, for example, doctors looking at her MRI told us she was deaf because of damage to a certain area of her brain - but we didn't think she was deaf. We took her for hearing tests, and despite what the MRI indicated, she can hear. Her brain just figured out how to do that on its own.
But as the above example demonstrates, each brain is so individual, and the way it responds is so unique, that it's absolutely impossible for anyone to predict how a child like Noa will do. A child with the exact same brain pattern may very different issues (though there are no two alike, because every stroke is different) - and there is no way to predict the outcome. In fact, when Noa was first diagnosed, the doctor told that she might be a vegetable who would never be able to sit up - or she might be blind and otherwise normal - we just had to throw all the therapy at her that we could and see what stuck. And that is pretty much what we've been doing.
Here is a link to a pediatric stroke site that has some more background information:
http://www.pediatricstrokenetwork.com/
What does Noa “see”?
This is the other question I get a lot. Noa’s particular kind of blindness is called Cortical Vision Impairment (or CVI), and really its more about understanding than it is about seeing. Noa has some damage to the optic nerve (which carries visual impulses to the brain), but there are at least some visual impulses getting to her brain. We know this thanks to a horrid test that we’ll never do again.
The problem is that her brain cannot make sense of this information. I usually explain like standing too close to an Impressionist painting: it just doesn’t make any sense.
There is a great range within the world of CVI – some of these kids can understand quite a lot of what they see, some understand less. Often for kids like Noa, the visual information they are getting seems distracting for them so they avoid it. For example, Noa will look away from something as she reaches for it because looking at it distracts her from finding it. CVI kids also tend to shake their heads a lot because it’s easier to see an object in motion than it is to see something that is still.
There is no operation or cure for CVI – but there are some new therapies that we’re working with and that we have found very helpful. The key tool is a light box (like the ones we used to use to view slides back in the day). It is eliminating all the distractions that make understanding visual information difficult and asking the child to focus on one thing. Basically the idea is to train the brain to recognize certain colors, shapes, objects. This is a very slow process – and like everything else in the world of Noa, it is impossible to predict where it will take us. But it is having a positive impact in that Noa seems more aware of the space around and gets the idea that there might be some useful information coming in through her eyes.
It’s as fascinating, but complicated area. Here are some good links:
http://www.ohiolionseyeresearch.com/cortical_visual_impairment.htm
http://www.aph.org/cvi/define.html
http://www.aph.org/cvi/articles/morse_2.html
I wish I had some links with more information about the therapies we're doing, but it's just not really on the net at this point. If I find a link I'll post it....
Also, because Noa had her stroke before birth, it's not a matter of RE-learning things that were lost, as it is in adult strokes, it is a matter of learning for the first time. Luckily, the brain is very plastic, especially early in life so, for example, doctors looking at her MRI told us she was deaf because of damage to a certain area of her brain - but we didn't think she was deaf. We took her for hearing tests, and despite what the MRI indicated, she can hear. Her brain just figured out how to do that on its own.
But as the above example demonstrates, each brain is so individual, and the way it responds is so unique, that it's absolutely impossible for anyone to predict how a child like Noa will do. A child with the exact same brain pattern may very different issues (though there are no two alike, because every stroke is different) - and there is no way to predict the outcome. In fact, when Noa was first diagnosed, the doctor told that she might be a vegetable who would never be able to sit up - or she might be blind and otherwise normal - we just had to throw all the therapy at her that we could and see what stuck. And that is pretty much what we've been doing.
Here is a link to a pediatric stroke site that has some more background information:
http://www.pediatricstrokenetwork.com/
What does Noa “see”?
This is the other question I get a lot. Noa’s particular kind of blindness is called Cortical Vision Impairment (or CVI), and really its more about understanding than it is about seeing. Noa has some damage to the optic nerve (which carries visual impulses to the brain), but there are at least some visual impulses getting to her brain. We know this thanks to a horrid test that we’ll never do again.
The problem is that her brain cannot make sense of this information. I usually explain like standing too close to an Impressionist painting: it just doesn’t make any sense.
There is a great range within the world of CVI – some of these kids can understand quite a lot of what they see, some understand less. Often for kids like Noa, the visual information they are getting seems distracting for them so they avoid it. For example, Noa will look away from something as she reaches for it because looking at it distracts her from finding it. CVI kids also tend to shake their heads a lot because it’s easier to see an object in motion than it is to see something that is still.
There is no operation or cure for CVI – but there are some new therapies that we’re working with and that we have found very helpful. The key tool is a light box (like the ones we used to use to view slides back in the day). It is eliminating all the distractions that make understanding visual information difficult and asking the child to focus on one thing. Basically the idea is to train the brain to recognize certain colors, shapes, objects. This is a very slow process – and like everything else in the world of Noa, it is impossible to predict where it will take us. But it is having a positive impact in that Noa seems more aware of the space around and gets the idea that there might be some useful information coming in through her eyes.
It’s as fascinating, but complicated area. Here are some good links:
http://www.ohiolionseyeresearch.com/cortical_visual_impairment.htm
http://www.aph.org/cvi/define.html
http://www.aph.org/cvi/articles/morse_2.html
I wish I had some links with more information about the therapies we're doing, but it's just not really on the net at this point. If I find a link I'll post it....
Welcome to the Land of Noa
Welcome Friends and Family!
As many of you already know, we'll be traveling down to North Carolina about a week so that Noa can have an umbilical stem cell transfusion - this is a new process using her own umbilical stem cells which we hope will help to repair some of the damage caused by a pre-natal stroke that left her blind and dealing with a number of developmental issues.
We know you all have a lot of questions - everything from "what is a pre-natal stroke?" to "what is this stem cell thing supposed to do?" and "how does it work?" I'm not sure we can answer all of your questions here. In fact, there are many questions that we don't know the answers to ourselves!
For those of you who don't know Noa in person, I should let you know that she is one of the most vibrant, fun-loving and optimistic people I know. It's easy to get terrified and/or depressed reading all this medical information and to get the image of Noa's situation as sad. But when you're around her, it's hard to feel that - she has an infectious laugh and she loves to use it. She even wakes up laughing! And for a kid who can't walk or talk she sure does boss us around and exhaust us!
Noa communicates with us through sign language which she has learned, very much like Helen Keller did, by showing her hand-over-hand. Like any toddler she spends a lot of time wanting us to do "more" of this, or "stop" that over and over and over again. She is learning to walk with a walker and loves to be up on her feet. Once she finds her sense of balance, we'll all be in serious trouble!
Noa attends pre-school 5-days a week at the Jewish Guild for the Blind. She comes and goes on, yes, the short bus. In addition to providing her with contact with other visually impaired kids her age, and usual kidstuff like music and art, they also provide physical therapy, occupational therapy, vision therapy, speech therapy, feeding therapy as well as orientation and mobility. In addition to that we take her to extra physical therapy and music therapy. So she's a busy busy kid!
So welcome to the Land of Noa. It's a complicated place, it's a fascinating place, it's a wild ride, it's a laugh-fest and sometimes a cry-fest and it's ruled by an adorable, blond bundle of energy who is, as my friend Jim Abar says, cute like Pebbles, strong like Bam-Bam.
As many of you already know, we'll be traveling down to North Carolina about a week so that Noa can have an umbilical stem cell transfusion - this is a new process using her own umbilical stem cells which we hope will help to repair some of the damage caused by a pre-natal stroke that left her blind and dealing with a number of developmental issues.
We know you all have a lot of questions - everything from "what is a pre-natal stroke?" to "what is this stem cell thing supposed to do?" and "how does it work?" I'm not sure we can answer all of your questions here. In fact, there are many questions that we don't know the answers to ourselves!
For those of you who don't know Noa in person, I should let you know that she is one of the most vibrant, fun-loving and optimistic people I know. It's easy to get terrified and/or depressed reading all this medical information and to get the image of Noa's situation as sad. But when you're around her, it's hard to feel that - she has an infectious laugh and she loves to use it. She even wakes up laughing! And for a kid who can't walk or talk she sure does boss us around and exhaust us!
Noa communicates with us through sign language which she has learned, very much like Helen Keller did, by showing her hand-over-hand. Like any toddler she spends a lot of time wanting us to do "more" of this, or "stop" that over and over and over again. She is learning to walk with a walker and loves to be up on her feet. Once she finds her sense of balance, we'll all be in serious trouble!
Noa attends pre-school 5-days a week at the Jewish Guild for the Blind. She comes and goes on, yes, the short bus. In addition to providing her with contact with other visually impaired kids her age, and usual kidstuff like music and art, they also provide physical therapy, occupational therapy, vision therapy, speech therapy, feeding therapy as well as orientation and mobility. In addition to that we take her to extra physical therapy and music therapy. So she's a busy busy kid!
So welcome to the Land of Noa. It's a complicated place, it's a fascinating place, it's a wild ride, it's a laugh-fest and sometimes a cry-fest and it's ruled by an adorable, blond bundle of energy who is, as my friend Jim Abar says, cute like Pebbles, strong like Bam-Bam.
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