This is my personal anthem after last night's incident with Chloe.
Oct 31, 2009
Oct 30, 2009
Halloween Goodies
Here are a few Halloween ideas that were too good not to share! We hope you have a Happy Halloween!
BHG Peeking Monster
BHG spiderweb soup
my recipes' mini ghost cupcakes
Joy the Baker Blood & Bones
Rhodes Rolls' Spider Dip Bowl
Green Gruel with Eyeballs from Epicurious
picky palate's mummy dogs
Martha's ladies fingers
Oct 28, 2009
The Mother at the Swings
The Mother at the Swings
by Vicki Forman
It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"
Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.
And, yes, he also loves to swing because all children love to swing.
I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.
"He really loves to go high," the mother at the swings says. "He's not afraid at all."
"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."
"Well, he must have other ways of knowing," she says. "Because he definitely loves it."
My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.
And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.
When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.
I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.
The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?
She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.
~
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.
It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.
by Vicki Forman
It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"
Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.
And, yes, he also loves to swing because all children love to swing.
I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.
"He really loves to go high," the mother at the swings says. "He's not afraid at all."
"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."
"Well, he must have other ways of knowing," she says. "Because he definitely loves it."
My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.
And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.
When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.
I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.
The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?
She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.
~
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.
It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.
Oct 27, 2009
Try This Tuesday: Equipment We Can't Live Without
Tara's Recommendations:
Chloe first used a touch screen at an Occupational Therapy visit. She now has one of her own at our house (Touch Window), that was provided by our school district augmentative team. The software that came with the touch screen is interactive and specific for Chloe's age-group. I LOVE it because it helps Chloe with fine-motor skills, decision-making skills, and is helping her learn things like counting, colors, etc, etc.... while having fun! It doesn't get any better than that. =)
We use The Listening Program cd's from Advanced Brain Technologies. Chloe loves listening to the music and its benefits have been proven to help those with neurologic disorders. Before she was approved for the program by an audiologist, we were anxious to do music therapy and started out with Sound Health cd's, which Chloe also really enjoyed (and they also seemed to help with sensory integration!)
We don't have this yet, but I've heard rave reviews from some friends who do hippotherapy with Chloe that the special tomato chairs and strollers are 'can't live without' items. I'm eying this chair for Chloe.
In the meantime, we use the Bjorn Baby Sitter. I like it because it folds up to be flat, so it's easy to take places when we need to have somewhere to sit her, but don't necessarily want to take the bulky wheelchair or stroller.
Danyele's Recommendations:
Z-vibe for picky eaters who need a little help with strong tastes or oral defensiveness...it's fun and the kids love it. You can add flavors to the tip before meals or during meals, use it for introducing new foods or for those that the kiddos don't like.
My kiddos have all benefited from the Wilbarger Brushing Protocol. It has calmed them and helped them focus and brought them to a place where they can enjoy things instead of being stressed.
The play tunnel from IKEA (less than $20)...perfect for getting the kiddos on their hands and knees for good gross motor skills and heavy work. We put "rewards" or fun toys at the end of the tunnel to get them through.
Keri's Recommendations:
First is Logan's P's and Q's Chewy Tubes. Kinda funny, I had these chewy tubes for over a year and he never touched them no matter how I disguised them. All of a sudden, one day something clicked and now he LOVES gnawing on those darn things! So much that he chewed through the Q's squiggly majigger. Time for some new ones.
Second is his Freedom Concepts Bicycle. Only the best bike on earth! The support and ease of this bike makes riding a bike enjoyable for the kiddo and it's NOT WORK. One of the best features for the parent is the ability to steer and brake from behind. Kiddos have the capability of steering and pedaling all by themselves as they gain the ability. I could literally rant and rave about this bike night and day. If I only had the time, I would!
Heidi's Recommendation:
There are lots of "can't live without" items in our house. For me a main thing would be Junior's overhead lift. The lift is a portable overhead system called the easy track, the motor is called the Voyager and is made by Guardian. He has a set of the legs in his bedroom and also in our living room. There is ten feet between the legs so plenty of room to wheel his chair underneath for lifts or for him to get on his bike or just hang out on the floor.
Becky's Recommendations:
His swing is an indoor swing and it's probably my most favorite luxury item for Ben. My kids climb in with him and love to swing away. Available from South Paw Industries.
His jogger stroller is a handicap built one and I love it more than his wheelchair because it can go EVERYWHERE! His wheelchair is really made for smooth surfaces, not outdoorsy ones and so we end up using that more.
Colleen's Recommendations:
We use the hensinger for more head support. The hensinger has been great to use with the carseat, stroller, tumbleform chair, etc. We cover it with fancy knee socks or leg warmers for a more stylish look.
I love the Svan High Chair. The seat height and depth is adjustable same with the foot rest. It grows with the child.
Kennedy loved the Kaye Reverse Walker. She could walk and stand holding this. It was great for her to get around. Gotta get the handle though...it is a back-saver for the caregiver.
We love the infinity feeding pump. It is portable, small and light weight. It can be used on an IV pole, by itself or in a backpack. This has made tube feeding so much easier. The only issues we have is that the cover that closes sometimes has broken. We use a medical company to get all our tube feeding supplies, so we have been able to just trade. I would definitly prefer to rent vs buy because of this issue.
Another thing we liked, but currently do not have to use, are farrell valve bags. These we used while Kennedy had a gjtube for gastric pressure relief. These we did some homemade covers for as the contents are not pretty.
Amber's Recommendations:
I would be one back hurtin momma if I did not have this Bath Chair. When Brandon turned a year old it seemed harder and harder to get him in the tub and out. So we got a Bath Chair and they are great. It lays on the bottom of the tub or on a stand. The back lounges back all the way or you can have them in sitting position. This chair is awesome for something as important as a bath.
Ashley's Recommendation:
We have lots of equipment, but by far our favorite is the newest: Clayton's bicycle. Clayton had been asking to ride a bike for a while, but we knew he would need a modified one. Then he actually won one at our church's Easter raffle! Brian did his best to modify it so that he could somehow ride it, but there was no way he would ever feel "independent" on it. We started researching adapted bikes online and found this one (Triad) at adaptivemall.com. It took a month or so to actually get it once it was ordered since they are made to specific order, but it was worth the wait and the hefty price tag!!! On the very first day, he learned to propel himself and within a week, he could steer it by himself! It's given him such a sense of independence--he loves it!! It's great exercise for both his legs and his lungs, not to mention great occupational therapy for his hands. Was it expensive? Yes. Was it worth it? YOU BETCHA! The look on his face when he's totally in control of where he is going is PRICELESS!
Beth's Recommendations:
Sure Step SMO ankle braces (http://surestep.net/media/pdf/SMO-trifold-brochure.pdf). These were a great alternative to a bulkier AFO. They were very lightweigt and fit into way more shoes than some of the alternatives. And, sometimes, even a cute shoe makes the littlest of ladies feel pretty. More importantly, they seemed to have done the trick and give her the support she needed to walk, and from what her pediatric orthopedic surgeon tells us she really "looks good". Currently, her doctor (orthopedist) and her physical therapist are going back and forth as to whether or not she even needs AFOs anymore. Given their reasons, our own research, her progress, and our 'gut' feeling, we have decided to let her try it on her own for awhile. Things are going great!
Benik wrist/hand splints (http://www.benik.com). Betsy's wrists deviated pretty badly for the first year or so of her life. We put these on her for naps, and bedtime, and any other 'down time' and by 18 months or so, she didn't have to wear them anymore. For awhile, her wrists would deviate when she was tired, but now I don't notice it at all anymore. They were hand-washable, and could be re-molded as she grew.
Pediatric reverse wheel walker. This little device was awesome. She may have only used it for about 6 months, but it really gave her the confidence she needed to go it alone. She has been walking for a little over a year now, completely independantly. Towards the end of her journey with the walker, she would CARRY it up off of the ground while walking. That was our sign that she didn't need it anymore. WOW! That's double the work if you ask me!
Prentke Romich Springboard (http://www.prentrom.com/springboardlite). This little puppy is A.M.A.Z.I.N.G! Betsy is still learning the ropes of the Sprinboard and working on her fine motor coordination to push the buttons, especially in the smaller cell settings, but it has really given her the communication outlet she has been yearning for. Right now, we use it for simple games, books, basic routines, and school lesson plans. It is really a profound thing to watch her lead a game of 'Simon Says' with her sister and brothers, and they love that she can do it, too. You can also download your own pictures for the cells. So, there could be a whole page of your family members, or kids that your child goes to school with, etc. This gives her a really functional association which is fantastic. This is by far my favorite piece of equipment we've encountered. She loves it!
What are the 'cannot live without' items in your house? Please share!!!
Chloe first used a touch screen at an Occupational Therapy visit. She now has one of her own at our house (Touch Window), that was provided by our school district augmentative team. The software that came with the touch screen is interactive and specific for Chloe's age-group. I LOVE it because it helps Chloe with fine-motor skills, decision-making skills, and is helping her learn things like counting, colors, etc, etc.... while having fun! It doesn't get any better than that. =)
We use The Listening Program cd's from Advanced Brain Technologies. Chloe loves listening to the music and its benefits have been proven to help those with neurologic disorders. Before she was approved for the program by an audiologist, we were anxious to do music therapy and started out with Sound Health cd's, which Chloe also really enjoyed (and they also seemed to help with sensory integration!)
We don't have this yet, but I've heard rave reviews from some friends who do hippotherapy with Chloe that the special tomato chairs and strollers are 'can't live without' items. I'm eying this chair for Chloe.
In the meantime, we use the Bjorn Baby Sitter. I like it because it folds up to be flat, so it's easy to take places when we need to have somewhere to sit her, but don't necessarily want to take the bulky wheelchair or stroller.
Danyele's Recommendations:
Z-vibe for picky eaters who need a little help with strong tastes or oral defensiveness...it's fun and the kids love it. You can add flavors to the tip before meals or during meals, use it for introducing new foods or for those that the kiddos don't like.
My kiddos have all benefited from the Wilbarger Brushing Protocol. It has calmed them and helped them focus and brought them to a place where they can enjoy things instead of being stressed.
The play tunnel from IKEA (less than $20)...perfect for getting the kiddos on their hands and knees for good gross motor skills and heavy work. We put "rewards" or fun toys at the end of the tunnel to get them through.
Keri's Recommendations:
First is Logan's P's and Q's Chewy Tubes. Kinda funny, I had these chewy tubes for over a year and he never touched them no matter how I disguised them. All of a sudden, one day something clicked and now he LOVES gnawing on those darn things! So much that he chewed through the Q's squiggly majigger. Time for some new ones.
Second is his Freedom Concepts Bicycle. Only the best bike on earth! The support and ease of this bike makes riding a bike enjoyable for the kiddo and it's NOT WORK. One of the best features for the parent is the ability to steer and brake from behind. Kiddos have the capability of steering and pedaling all by themselves as they gain the ability. I could literally rant and rave about this bike night and day. If I only had the time, I would!
Heidi's Recommendation:
There are lots of "can't live without" items in our house. For me a main thing would be Junior's overhead lift. The lift is a portable overhead system called the easy track, the motor is called the Voyager and is made by Guardian. He has a set of the legs in his bedroom and also in our living room. There is ten feet between the legs so plenty of room to wheel his chair underneath for lifts or for him to get on his bike or just hang out on the floor.
Becky's Recommendations:
His swing is an indoor swing and it's probably my most favorite luxury item for Ben. My kids climb in with him and love to swing away. Available from South Paw Industries.
His jogger stroller is a handicap built one and I love it more than his wheelchair because it can go EVERYWHERE! His wheelchair is really made for smooth surfaces, not outdoorsy ones and so we end up using that more.
Colleen's Recommendations:
We use the hensinger for more head support. The hensinger has been great to use with the carseat, stroller, tumbleform chair, etc. We cover it with fancy knee socks or leg warmers for a more stylish look.
I love the Svan High Chair. The seat height and depth is adjustable same with the foot rest. It grows with the child.
Kennedy loved the Kaye Reverse Walker. She could walk and stand holding this. It was great for her to get around. Gotta get the handle though...it is a back-saver for the caregiver.
We love the infinity feeding pump. It is portable, small and light weight. It can be used on an IV pole, by itself or in a backpack. This has made tube feeding so much easier. The only issues we have is that the cover that closes sometimes has broken. We use a medical company to get all our tube feeding supplies, so we have been able to just trade. I would definitly prefer to rent vs buy because of this issue.
Another thing we liked, but currently do not have to use, are farrell valve bags. These we used while Kennedy had a gjtube for gastric pressure relief. These we did some homemade covers for as the contents are not pretty.
Amber's Recommendations:
Brandon also has the best carseat in the world [the Britax Traveler Plus]. Without it he would slump down in his seat and cry because he was so uncomfortable. What is different about this chair is that it is made especially for special needs with extra cushion and head support. It is like the carseats of all carseats... its our cadallic for Brandon.
I would be one back hurtin momma if I did not have this Bath Chair. When Brandon turned a year old it seemed harder and harder to get him in the tub and out. So we got a Bath Chair and they are great. It lays on the bottom of the tub or on a stand. The back lounges back all the way or you can have them in sitting position. This chair is awesome for something as important as a bath.Ashley's Recommendation:
We have lots of equipment, but by far our favorite is the newest: Clayton's bicycle. Clayton had been asking to ride a bike for a while, but we knew he would need a modified one. Then he actually won one at our church's Easter raffle! Brian did his best to modify it so that he could somehow ride it, but there was no way he would ever feel "independent" on it. We started researching adapted bikes online and found this one (Triad) at adaptivemall.com. It took a month or so to actually get it once it was ordered since they are made to specific order, but it was worth the wait and the hefty price tag!!! On the very first day, he learned to propel himself and within a week, he could steer it by himself! It's given him such a sense of independence--he loves it!! It's great exercise for both his legs and his lungs, not to mention great occupational therapy for his hands. Was it expensive? Yes. Was it worth it? YOU BETCHA! The look on his face when he's totally in control of where he is going is PRICELESS!
Beth's Recommendations:
Sure Step SMO ankle braces (http://surestep.net/media/pdf/SMO-trifold-brochure.pdf). These were a great alternative to a bulkier AFO. They were very lightweigt and fit into way more shoes than some of the alternatives. And, sometimes, even a cute shoe makes the littlest of ladies feel pretty. More importantly, they seemed to have done the trick and give her the support she needed to walk, and from what her pediatric orthopedic surgeon tells us she really "looks good". Currently, her doctor (orthopedist) and her physical therapist are going back and forth as to whether or not she even needs AFOs anymore. Given their reasons, our own research, her progress, and our 'gut' feeling, we have decided to let her try it on her own for awhile. Things are going great!
Benik wrist/hand splints (http://www.benik.com). Betsy's wrists deviated pretty badly for the first year or so of her life. We put these on her for naps, and bedtime, and any other 'down time' and by 18 months or so, she didn't have to wear them anymore. For awhile, her wrists would deviate when she was tired, but now I don't notice it at all anymore. They were hand-washable, and could be re-molded as she grew. 
Pediatric reverse wheel walker. This little device was awesome. She may have only used it for about 6 months, but it really gave her the confidence she needed to go it alone. She has been walking for a little over a year now, completely independantly. Towards the end of her journey with the walker, she would CARRY it up off of the ground while walking. That was our sign that she didn't need it anymore. WOW! That's double the work if you ask me!
Prentke Romich Springboard (http://www.prentrom.com/springboardlite). This little puppy is A.M.A.Z.I.N.G! Betsy is still learning the ropes of the Sprinboard and working on her fine motor coordination to push the buttons, especially in the smaller cell settings, but it has really given her the communication outlet she has been yearning for. Right now, we use it for simple games, books, basic routines, and school lesson plans. It is really a profound thing to watch her lead a game of 'Simon Says' with her sister and brothers, and they love that she can do it, too. You can also download your own pictures for the cells. So, there could be a whole page of your family members, or kids that your child goes to school with, etc. This gives her a really functional association which is fantastic. This is by far my favorite piece of equipment we've encountered. She loves it!
What are the 'cannot live without' items in your house? Please share!!!
Oct 26, 2009
Oct 24, 2009
Little Victories
I think this song is a good one for those of us who relish in little victories sooooo much!
Chloe's most recent little victory:
Feeding herself a popsicle -- with her RIGHT hand, no less!
This time, I'll be sailing
No more bailing boats for me
I'll be out here on the sea
Just my confidence and me
And I'll be awful sometimes
Weakened to my knees
But I'll learn to get by
On the little victories
This time, I'll have no fear
I'll be standing strong and tall
Turn my back towards them all
And I'll be awful sometimes
Weakened to my knees
I'll learn to get by
And I'll learn to get by
On the little victories
And if the world decides to catch up with me
It's a little victory.
No more bailing boats for me
I'll be out here on the sea
Just my confidence and me
And I'll be awful sometimes
Weakened to my knees
But I'll learn to get by
On the little victories
This time, I'll have no fear
I'll be standing strong and tall
Turn my back towards them all
And I'll be awful sometimes
Weakened to my knees
I'll learn to get by
And I'll learn to get by
On the little victories
And if the world decides to catch up with me
It's a little victory.
Oct 23, 2009
Spina Bifida Awareness
October is Spina Bifida Awareness Month
Spina bifida is a major birth defect of a baby's spine. It is one of the most common, permanently disabling birth defects in the United States.
Spina bifida occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant. It happens when the spine and back bones do not close all the way. When this happens, the spinal cord and back bones do not form as they should. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac and it is damaged. Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries.
Some of the problems that a person born with spina bifida might face include:
• Not being able to move lower parts of their body. (Some might need to use crutches,
braces, or wheelchairs to get around.)
• Loss of bowel and bladder control. (Some might have to wear protective clothing. Others learn new ways to empty their bladders and bowels.)
• Fluid building up and putting pressure on the brain (hydrocephalus), which needs to be fixed with an operation.
• Learning disabilities.
• Allergy to latex (a created material found in some rubber-type products such as balloons
or hospital gloves).
All children born with spina bifida don't have the same needs. Some children have problems that are much more severe than others. Even so, with the right care, most of these children will grow up to lead full and productive lives.
Preventing Spina Bifida
Most, but not all, cases of spina bifida can be prevented. Folic acid is a B vitamin that the body needs to make healthy new cells. If a woman has enough folic acid in her body before and during pregnancy, her baby is less likely to have spina bifida or another defect of the brain or spine.
Women need to take folic acid every day, starting before they get pregnant. Every woman who could possibly get pregnant should take 400 micrograms (400 μg or 0.4 mg) of folic acid daily in a vitamin or in foods that have been enriched with folic acid.
Learn more about folic acid, how to get enough each day, and where to find free education materials at the CDC website.
Resources for Families and Individuals Affected by Spina Bifida
* National Resource Center, Spina Bifida Association
* Spina Bifida Association
* SBA Chapters, Spina Bifida Association
(Thank you, Kimberly, for sharing this with us!)
Spina bifida is a major birth defect of a baby's spine. It is one of the most common, permanently disabling birth defects in the United States.
Spina bifida occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant. It happens when the spine and back bones do not close all the way. When this happens, the spinal cord and back bones do not form as they should. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac and it is damaged. Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries.
Some of the problems that a person born with spina bifida might face include:
• Not being able to move lower parts of their body. (Some might need to use crutches,
braces, or wheelchairs to get around.)
• Loss of bowel and bladder control. (Some might have to wear protective clothing. Others learn new ways to empty their bladders and bowels.)
• Fluid building up and putting pressure on the brain (hydrocephalus), which needs to be fixed with an operation.
• Learning disabilities.
• Allergy to latex (a created material found in some rubber-type products such as balloons
or hospital gloves).
All children born with spina bifida don't have the same needs. Some children have problems that are much more severe than others. Even so, with the right care, most of these children will grow up to lead full and productive lives.
Preventing Spina Bifida
Most, but not all, cases of spina bifida can be prevented. Folic acid is a B vitamin that the body needs to make healthy new cells. If a woman has enough folic acid in her body before and during pregnancy, her baby is less likely to have spina bifida or another defect of the brain or spine.
Women need to take folic acid every day, starting before they get pregnant. Every woman who could possibly get pregnant should take 400 micrograms (400 μg or 0.4 mg) of folic acid daily in a vitamin or in foods that have been enriched with folic acid.
Learn more about folic acid, how to get enough each day, and where to find free education materials at the CDC website.
Resources for Families and Individuals Affected by Spina Bifida
* National Resource Center, Spina Bifida Association
* Spina Bifida Association
* SBA Chapters, Spina Bifida Association
(Thank you, Kimberly, for sharing this with us!)
Oct 22, 2009
A True Art Form
"The more I think about it, the more I realize there is nothing more artistic than to love someone."
~ Vincent Van Vogh
Oct 21, 2009
He's My Son!
Benjamin was born on April 4, 2002. I knew nothing of his many problems until he was born...except that deep down inside during the course of my pregnancy I felt that something was not right. Call it a mother's instinct. (we're usually right) Shortly after birth, my son was taken by medflight to Dartmouth Hitchcock Medical Center. His brain had not developed and he was showing signs of either seizures, myoclonic jerking or a combination of both. As a result, the Intensive Care doctor loaded him with phenobarbital which suppressed his respiratory drive. He was intubated to keep him breathing. I remember those first few days as being such a whirlwind. I couldn't even see straight. (or maybe that was because my eyes were constantly leaking) We were getting hit from every direction with devestating news. They told us that Benjamin would not live. That was the point that we (as parents) hit rock bottom. In the days following his birth, we prepared for his death. Family members from all over flew in to support us during this hard time. We had made the very difficult decision to withdraw his life support and let him go peacefully while surrounded by family. During this preparation stage I was sitting with Benjamin, holding him in my lap. The ICN doctor had come in and was sitting across from me. I remember feeling uncomfortable because he wasn't saying anything to me, he was just staring at Ben's vent while rocking in his chair. When I couldn't take the silence anymore I asked him..."What is going on?" He told me that Ben was breathing above the vent (he was taking breaths on his own) and that he felt that he might just be able to wean him from it. That's when my life took a 360 degree turn. I was ecstatic. I felt hope. I knew in my heart that I would get to take my baby, that I had fallen head over heels with, home. What a joyous feeling that was. My family members still came, but instead of mourning, we were celebrating. I felt like the luckiest mother in the world. (still do) Two days after our gathering, Ben was extubated, and discharged soon after that. Our lives were forever changed.
Benjamin is now a happy, thriving 7 year old. It's not because of his equipment or the formula we are feeding him that he is still here with us (although that certainly helps), it's because he is LOVED. That's the magical ingredient. This child GROWS on LOVE. Every day is a privilege. Every moment is precious. And every night before I climb into bed, I thank my Heavenly Father for the beautiful gift that is my son.
Oct 20, 2009
The Value of Life
Awhile ago I was sitting at my older son's (Kaleb) baskteball game holding Ben in my lap. He was needing some assistance so I reached over and turned on his suction machine to help him out. As I did this, one of the parents of a child on Kaleb's basketball team leaned over and asked me, "what happened to him?" It kind of threw me off guard a little bit because I wasn't sure if he was wondering why I was suctioning him or if he wanted to know why Ben was handicapped. I had to clarify with him and found he was asking about the latter. I have been asked this question many times in Ben's life. Most of the time I am completely fine with it. That day I was a little reserved in how much I shared because right away I am usually able to discern whether the person is genuinely concerned or just being nosey. This man was NOT genuinely concerned. I was polite and gave him the quick answer "his brain did not develop when I was pregnant with him". Of course that led to more curious questions like "did you know when you were pregnant with him?" I will always answer honestly so that people know where I stand on the value of life, whether they agree with me or not. During our brief conversation he flippantly remarked that he and his wife knew their first baby had spina bifida and so they aborted because "they didn't want to deal with what I was dealing with". It made me sick to my stomach. I couldn't believe that he could throw that out there so casually as if we were talking about the weather. It made me ill knowing that he was sitting there next to me and devaluing Benjamin as a person, like he was something that should have been thrown away. I understand that this person does not have the knowledge that I do and so mostly I just feel sorry for him. I feel sorry that he lost out on the chance to raise a child with special needs. I feel sorry that he doesn't realize just how valuable these children are. On the other side, how blessed am I to realize the full potential of these children? To be blessed to be a parent to such a child.
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