I just found this blog and am in love with that little boy. He is SO cute. Not to mention that this is a spectacular list of books for me to read at B's school. The rest of the blog has lots of pictures, and is very interesting to read about their adventures.
I talked some more to B about the questions. He's pretty secure - we say "Nothing's wrong with my arm, it's not a big deal, I was just born like that," etc.
I asked him which friend asked him about his arm. He said, "a lot of dem do." :-( I think I know it was daycare, not preschool. So that's where I'm volunteering first.
He still likes going to school. But he has been sleeping with us every night. Still scared of the dark.
So I'm going to his school at some point, not sure when, to read some books about differences. And I'm re-drafting and re-deciminating the letter to parents (and teachers) because, well, everyone needs to be educated.
I also got in trouble from MY mom for not telling her I was contracting. Sorry mutti. I didn't want to worry her, but then she read it HERE.
My contractions stopped by the time I went to sleep Friday night. They haven't returned. I think I was very dehydrated. I'm off bedrest - didn't even need to go see doctor. Have been at work and feeling very good. In a walrus sort of waddling way.
Here's a question for those moms with partners: when I go play with Brody, I rarely ask J to join in. I view it as Mommy/B time, and as Daddy rest time. When J goes off to play with B, though, the most 'break' I get is 3 minutes, then it's screaming for me to come and join them in the fun. But I just wanted to watched My Fair Wedding or The Office episode I missed or read Us Weekly. It's so annoying. I love playing with B, but sometimes, it's nice to have some me time, especially since I'm about to lose ME time for a long time in a few weeks. Anyway, do other partners do this? Or is it just me and my one friend's, to whom I've already complained? :-)
Finally, we decided not to do the 3D/4D ultrasound. $159 is just too much - it's pretty much the budget for furnishing the rest of bubba's room. I'm hoping this means bubba will stay put long enough to make it to the scheduled December 1 c-section.
Showing posts with label bilateral radial club hands. Show all posts
Showing posts with label bilateral radial club hands. Show all posts
Wednesday, October 13, 2010
Tuesday, February 16, 2010
Down and dirty
The good news is, I have a lot brimming in my wee head.
The bad news is, I don't have the time to write it.
So, in uninteresting prose, the latest:
1. We are getting the surgery done again to re-straighten Brody's right hand. In addition to his earlier comments, he offered up the following gem:
Me: (driving out of the daycare parking lot) Ok, Brody, which way, right or left?
Brody: RIGHT! And I tell da doctor to huwee up and make my wight hand straight! I say, "Huwee up docta!"
Except for what I've mentioned here, we have NOT talked with him about his hands or the surgery. In law, we call what Brody said a "spontaneous utterance." I'm concluding it's okay for him to have the surgery. Timing is after the trip to Europe, because I'd rather not travel with a chance of infection, a metal rod in his ulna that could poke out of his skin, or a metal rod that would make the metal detectors flip out.
2. The 40 before 40 list is coming this week. I swear. No one cares but me, I realize, but I say it anyway.
3. Brody had a playdate with my co-worker's daughter, who is his age. Ann loved Brody and it was so cute to see them play together. They raced horses on sticks. Then another girl's mom at Brody's school asked us to get together with them for playdates. She has two daughters, one older than Brody (she is 5 and is in B's class) and one younger (she is 2). The older girl invited Brody to her birthday party a few weeks ago. He is in demand.
4. Our house faces east. Since having a child, as we all know, I am awake before dawn many times. I never noticed until Brody though how beautiful the colors are in the sky. When Brody was learning his colors, and really because the sky was just ridiculously stunning, I would hold him and ask him to name all of the colors he saw in the sunrise: purple, orange, pink, red. . .
One morning this weekend, I was making coffee in the kitchen (facing west) and Brody was in the living room. He said, "Mommy! Come see all da pretty colors in da sky!" I walked into the living room, picked him up and listened as he told me all the colors he saw in the sky.
I thought, "My work here is done." He's 3 and appreciates sunrises.
5. We had a meeting with the occupational therapy team at Brody's preschool. I was, naturally, anxious about it. It's my go-to reaction for everything. In my defense, I thought we were only supposed to meet once a year, for the assessment. The OT team is two sisters, who look very much alike, and it was a bit unsettling.
Until they started telling us how sweet, and brave, and courageous, and smart Brody is.
Their job is to make sure he can get through the day in the classroom. Some days, they said, they wonder what they are doing there, because he can get through the day without assistance. He does everything the other kids do, just perhaps a bit differently.
We talked about how he holds a pen. It's not the classic tripod, how you and I hold a pen. We thought that was the way to do it - remind him to hold it how we hold it.
He doesn't. He holds it his own way.
The OT sisters said for us to not care how he holds it, but to care what he is drawing, the output. If the output is legible, then how he holds it is irrelevant.
The OT sisters also said, and I love this, we have to honor how Brody is creating connections between his brain and his hands, we have to honor how Brody figures things out.
Our brains go the path of least resistance, they explained. So it may take Brody a few attempts to figure out how to best perform certain tasks. Coupled with that, the sisters said, Brody is at an age when he learns at a furious pace, and his brain is acquiring thousands of pieces of information each day. I suppose the message was, relax. He'll figure it out.
His goals for the 2009-2010 schoolyear: draw a sun, a cross, a circle, stand up without using his head for balance. Completed (three months early).
That's why we were meeting. We needed to create new goals because the darling boy is ahead of our timeline.
Other improvements: At the start of the school year, he refused to go on the slide at the school. Not because of the slide, but because to get to the top of it, you have to climb, using your hands. Brody just said he didn't want to do it and wouldn't try.
Now he does it regularly, without assistance. Just figured it out himself. He doesn't climb like the other kids, but he gets up the ladder, and slides down the slide.
With abandon.
The bad news is, I don't have the time to write it.
So, in uninteresting prose, the latest:
1. We are getting the surgery done again to re-straighten Brody's right hand. In addition to his earlier comments, he offered up the following gem:
Me: (driving out of the daycare parking lot) Ok, Brody, which way, right or left?
Brody: RIGHT! And I tell da doctor to huwee up and make my wight hand straight! I say, "Huwee up docta!"
Except for what I've mentioned here, we have NOT talked with him about his hands or the surgery. In law, we call what Brody said a "spontaneous utterance." I'm concluding it's okay for him to have the surgery. Timing is after the trip to Europe, because I'd rather not travel with a chance of infection, a metal rod in his ulna that could poke out of his skin, or a metal rod that would make the metal detectors flip out.
2. The 40 before 40 list is coming this week. I swear. No one cares but me, I realize, but I say it anyway.
3. Brody had a playdate with my co-worker's daughter, who is his age. Ann loved Brody and it was so cute to see them play together. They raced horses on sticks. Then another girl's mom at Brody's school asked us to get together with them for playdates. She has two daughters, one older than Brody (she is 5 and is in B's class) and one younger (she is 2). The older girl invited Brody to her birthday party a few weeks ago. He is in demand.
4. Our house faces east. Since having a child, as we all know, I am awake before dawn many times. I never noticed until Brody though how beautiful the colors are in the sky. When Brody was learning his colors, and really because the sky was just ridiculously stunning, I would hold him and ask him to name all of the colors he saw in the sunrise: purple, orange, pink, red. . .
One morning this weekend, I was making coffee in the kitchen (facing west) and Brody was in the living room. He said, "Mommy! Come see all da pretty colors in da sky!" I walked into the living room, picked him up and listened as he told me all the colors he saw in the sky.
I thought, "My work here is done." He's 3 and appreciates sunrises.
5. We had a meeting with the occupational therapy team at Brody's preschool. I was, naturally, anxious about it. It's my go-to reaction for everything. In my defense, I thought we were only supposed to meet once a year, for the assessment. The OT team is two sisters, who look very much alike, and it was a bit unsettling.
Until they started telling us how sweet, and brave, and courageous, and smart Brody is.
Their job is to make sure he can get through the day in the classroom. Some days, they said, they wonder what they are doing there, because he can get through the day without assistance. He does everything the other kids do, just perhaps a bit differently.
We talked about how he holds a pen. It's not the classic tripod, how you and I hold a pen. We thought that was the way to do it - remind him to hold it how we hold it.
He doesn't. He holds it his own way.
The OT sisters said for us to not care how he holds it, but to care what he is drawing, the output. If the output is legible, then how he holds it is irrelevant.
The OT sisters also said, and I love this, we have to honor how Brody is creating connections between his brain and his hands, we have to honor how Brody figures things out.
Our brains go the path of least resistance, they explained. So it may take Brody a few attempts to figure out how to best perform certain tasks. Coupled with that, the sisters said, Brody is at an age when he learns at a furious pace, and his brain is acquiring thousands of pieces of information each day. I suppose the message was, relax. He'll figure it out.
His goals for the 2009-2010 schoolyear: draw a sun, a cross, a circle, stand up without using his head for balance. Completed (three months early).
That's why we were meeting. We needed to create new goals because the darling boy is ahead of our timeline.
Other improvements: At the start of the school year, he refused to go on the slide at the school. Not because of the slide, but because to get to the top of it, you have to climb, using your hands. Brody just said he didn't want to do it and wouldn't try.
Now he does it regularly, without assistance. Just figured it out himself. He doesn't climb like the other kids, but he gets up the ladder, and slides down the slide.
With abandon.
Friday, July 10, 2009
Travel to the Shrine
By way of review, when Brody had the thumb pollicization in January on his very stubborn right hand, Hutch (surgeon) also re-inserted the rod to make his hand straight, ie, 180 degrees (the rod is drilled/inserted through the ulna from the wrist to the elbow).
Brody's right hand, in particular, is very very tight, and stubborn, and would prefer nothing else than for us to let it grow at a 90 degree angle toward his other hand (which is what all hands do when there is no radius bone in the arm to make them straight).
We say no. We say it must be straight. Or straightish. Three inch longer reach.
So, rod back in when the thumb is moved into place. Hand then 180 degrees. Or, like, 160.
In April, that pin is appearing as a bump near Brody's elbow. During the hospitalization, we check and it's still in the bone, meaning, it's still doing some good. Hutch says leave it as long as possible.
June. Hand starting to win the battle to go back to 90 degrees. Pin a bigger bulge. I email the person at Shriner's hospital - who (whom?) I actually really like - and she doesn't respond.
This week. Brody is now complaining about the pin. Or, rather, his elbow. He keeps whacking it, or rather, the pin. It hurts, and he cries and I don't blame him. Hand back at 90 degrees, pin a bigger bump, but not breaking the skin. (It did this once, last summer. Thank GOD we were in the hospital and Brody was high at the time because Hutch just put on a pair of gloves and extracted it).
I realize I never heard back from Hutch's scheduler.
Email again this morning. She responds. That we can come to the clinic July 22.
Less than 2 weeks away.
Which is great but also, not great. Because I now have the unenviable task of calling the travel arranger for the local Shrine, and requesting two airline tickets to Salt Lake with less than two weeks notice. I explained the situation and asked if it was possible. He said, "It's possible, of course, but it means we have to pay a lot more money for the tickets." I apologized.
I don't even blame him for the snark. I agree with him. This is rude and unnecessary. But it's for Brody, so we're doing it. Although yes, it's our fault for not following up sooner. God, what emotion would I have if I didn't have guilt?
And I called our local ortho surgeon. She can't see us before then. It's like an 8 week wait to see her.
Thus, I imagined the local Shrine was glaring at me not unlike Brody performing his mad face:
Brody also has a happy face, sad face, scared face, surprised face, and silly face. I'm trying to get them all on video because he goes from one to the next seamlessly on command.
Therefore, July 16 - pre surgery consult with the urologist to schedule a surgery for the hypospadias; and
July 22 (hopefully) Brody and I fly to Salt Lake to have the damn pin removed before it breaks skin and we have a co$tly trip to an ER; and get a further surgical plan on how to re-re-straighten the right hand.
Wednesday, June 10, 2009
Shock a bird, build your kid's self-esteem?
Brody has 4 fingers on each hand. Well, now he has 6 fingers and two thumbs. I am over the moon happy about that. He looks at his hands - specifically his new thumbs - and tells me that they are "beautiful," and "perfect," as he has heard us say so many times.
He insists, however, that when he holds up his whole hand and all his fingers, that there are FIVE.
When I ask him, for example, if he wants one or two pieces of toast, he holds up all of his fingers on one hand and says "Five, mommy! I want five toast!"
Or when we practice counting to ten, he goes to his hand, and says "Five!"
What the hell do I do? So far, after lots of thought, I've come up with....nothing. I just let it be. I figure sooner or later he'll figure it out. And since it's okay to have 4 fingers, or 8 or 11 or 2, what's the big deal. But should we be discussing this? Ignoring it? Save it for later? Don't ask, don't tell? I don't know. But it's factually inaccurate.
This quandary led me to buy this book. Building self-esteem for, as we say, differently limbed children.
I still hate all these labels I see everywhere. Although I can live with differently limbed. I made that one up based on children with a limb difference that this organization - whose picnic we are attending in August - gave me.
For example, I hate describing Brody or other kids as special - because we all are. I don't really enjoy differently abled - because we all are. I hate handicapped - because we all are in one way or another. But I hate these labels not just for the technical inaccuracies, but mostly I hate them because they are associated with negative implications or inferior inferences. And Brody - and every other person - does not deserve that lot in life. Maybe those associations are all in my head, but they still exist for me.
But it's also that the judgment with these labels - it is not friendly or nice; it's condescending, pure and simple. I detest condescension.
I like limb difference because it's factually accurate and nothing more.
Which leads me to Brody and the five. Do I emphasize it? I have in the past and I think I was wrong. I made a guy in a Red Robin costume jump in the restaurant when, one night at dinner, the giant bird came to visit our table, and I said to Brody "Look! He's got three fingers and a thumb, just like you!" The bird jerked his considerable head to Brody's hands. I smiled. Brody loves that Red Robin bird.
He insists, however, that when he holds up his whole hand and all his fingers, that there are FIVE.
When I ask him, for example, if he wants one or two pieces of toast, he holds up all of his fingers on one hand and says "Five, mommy! I want five toast!"
Or when we practice counting to ten, he goes to his hand, and says "Five!"
What the hell do I do? So far, after lots of thought, I've come up with....nothing. I just let it be. I figure sooner or later he'll figure it out. And since it's okay to have 4 fingers, or 8 or 11 or 2, what's the big deal. But should we be discussing this? Ignoring it? Save it for later? Don't ask, don't tell? I don't know. But it's factually inaccurate.
This quandary led me to buy this book. Building self-esteem for, as we say, differently limbed children.
I still hate all these labels I see everywhere. Although I can live with differently limbed. I made that one up based on children with a limb difference that this organization - whose picnic we are attending in August - gave me.
For example, I hate describing Brody or other kids as special - because we all are. I don't really enjoy differently abled - because we all are. I hate handicapped - because we all are in one way or another. But I hate these labels not just for the technical inaccuracies, but mostly I hate them because they are associated with negative implications or inferior inferences. And Brody - and every other person - does not deserve that lot in life. Maybe those associations are all in my head, but they still exist for me.
But it's also that the judgment with these labels - it is not friendly or nice; it's condescending, pure and simple. I detest condescension.
I like limb difference because it's factually accurate and nothing more.
Which leads me to Brody and the five. Do I emphasize it? I have in the past and I think I was wrong. I made a guy in a Red Robin costume jump in the restaurant when, one night at dinner, the giant bird came to visit our table, and I said to Brody "Look! He's got three fingers and a thumb, just like you!" The bird jerked his considerable head to Brody's hands. I smiled. Brody loves that Red Robin bird.
Is that wrong? I want Brody to have positive experiences about his hands, but then I think that just emphasized the difference and maybe was negative? How much self esteem can a kid get from having hands like a big red bird mascot? Talk about grasping at straws.
I don't know.
But it was kind of fun to shock the bird.
Thursday, May 28, 2009
He said, "It's perfect!"
Brody had the cast removed, which means we got our first real look at the new thumb. He wears a splint for a month full time, but we get to remove it when he takes baths, or goes swimming.
I've posted this picture on Facebook, his carepages, and now here. I can't get enough of it. His thumb is magnificent. Stunning. Captivating. I can say these things because I didn't have anything to do with it and so it's not (really) bragging.
It's all Dr. Doug Hutchinson at Shriners, and of course, the wondrous Brody.
Brody has thumbed his nose at being conventional and, instead, has thumbed his way to greatness.
I've posted this picture on Facebook, his carepages, and now here. I can't get enough of it. His thumb is magnificent. Stunning. Captivating. I can say these things because I didn't have anything to do with it and so it's not (really) bragging.
It's all Dr. Doug Hutchinson at Shriners, and of course, the wondrous Brody.
Brody has thumbed his nose at being conventional and, instead, has thumbed his way to greatness.
Too much? I know. I couldn't help it.
Oh, and the title of the post today is because that is exactly what Brody said, with a grin splitting his face open, when we were looking at his new thumb.
Thursday, April 2, 2009
a potentially meaningless observation
When I was growing up, one of the neighbors we had was Emery Booher.
Emery was a sweet old man. Sort of like a grandpa to me.
He and his wife lived across the street from us. His wife was quite senile, or maybe she had Alzheimers. At any rate, somehow I spent a lot of time in their house. I'd listen to Emery's wife talk on, while I would stare at the hundreds of china dolls dressed in 17th or 18th century dresses that made my 12 year old self blind with dress envy.
I'd also talk with Emery.
I don't remember how old he was, but he remembered well a time when there were no cars.
He told me how obnoxious "folks" thought cars were at first.
He also told me that when the government introduced social security numbers (see what I mean about old?), he remembers everyone being very nervous about the government having that much information and control over you.
I also think about the more recent history. While I was going through my miscarriages, I'd think, "Well, at least there's hope for me. Fifty years (a hundred years) ago there wouldn't be any treatment for my issues." The reproductive immunologist I treated with, Dr. Beer, his first successful "Beer baby" (a child born with the help of reproductive immunology) is now in his 30's.
After Brody was born, I was told that if he had been born a generation earlier, he probably would not have lived. Here's a gruesome discussion of the first documented TEF/Vater child - from 1839. That could have been Brody.
The first documented case of bilateral radial club hands was in 1733 - again, an autopsy. (They originally thought the condition stemmed from syphilis, apparently. Umm....no).
That made me think of my own evolution. If I'd been alive in the 18th century, or 1950's, I doubt I would have found the support of other women who suffered from miscarriages. I never would have found out about reproductive immunology (because (a) it didn't exist, and (b) I found out about it from the internet). And I doubt there would be any kind of open discussion about congenital anomalies in any kind of supportive or positive way.
But now, I have a blog, and a carepages site. I think every single one of the Vacterl families I know have at least one. Some have both. And that's not counting the message boards through Yahoo and IVillage. All dispensing confidential medical information, or monumentally personal emotional information.
I really have no point to this except I find it a fascinating evolution of us as a species or a culture....and I'm so grateful for the internet, and as much as I complain about them, the advancement of medicine and medical technology.
I'm so happy I am living at this moment in time.
Emery was a sweet old man. Sort of like a grandpa to me.
He and his wife lived across the street from us. His wife was quite senile, or maybe she had Alzheimers. At any rate, somehow I spent a lot of time in their house. I'd listen to Emery's wife talk on, while I would stare at the hundreds of china dolls dressed in 17th or 18th century dresses that made my 12 year old self blind with dress envy.
I'd also talk with Emery.
I don't remember how old he was, but he remembered well a time when there were no cars.
He told me how obnoxious "folks" thought cars were at first.
He also told me that when the government introduced social security numbers (see what I mean about old?), he remembers everyone being very nervous about the government having that much information and control over you.
I also think about the more recent history. While I was going through my miscarriages, I'd think, "Well, at least there's hope for me. Fifty years (a hundred years) ago there wouldn't be any treatment for my issues." The reproductive immunologist I treated with, Dr. Beer, his first successful "Beer baby" (a child born with the help of reproductive immunology) is now in his 30's.
After Brody was born, I was told that if he had been born a generation earlier, he probably would not have lived. Here's a gruesome discussion of the first documented TEF/Vater child - from 1839. That could have been Brody.
The first documented case of bilateral radial club hands was in 1733 - again, an autopsy. (They originally thought the condition stemmed from syphilis, apparently. Umm....no).
That made me think of my own evolution. If I'd been alive in the 18th century, or 1950's, I doubt I would have found the support of other women who suffered from miscarriages. I never would have found out about reproductive immunology (because (a) it didn't exist, and (b) I found out about it from the internet). And I doubt there would be any kind of open discussion about congenital anomalies in any kind of supportive or positive way.
But now, I have a blog, and a carepages site. I think every single one of the Vacterl families I know have at least one. Some have both. And that's not counting the message boards through Yahoo and IVillage. All dispensing confidential medical information, or monumentally personal emotional information.
I really have no point to this except I find it a fascinating evolution of us as a species or a culture....and I'm so grateful for the internet, and as much as I complain about them, the advancement of medicine and medical technology.
I'm so happy I am living at this moment in time.
Thursday, March 12, 2009
A call for editors
As I mentioned Monday, I'm drafting a letter to B's new preschool explaining his hands. I think there is a lot of natural curiosity, and I'd rather answer parents' and childrens' questions in an upfront way, rather than one day walk into daycare and have a teacher ask me if Brody has Downs syndrome in front of everyone. (Yes, that really happened, and that was after Brody had been there for a few months. I was shocked that the assistant director would not be more observant, or you know, read Brody's file).
I found the letter on this website, which I was excited to learn about. The draft on the website, however, is a bit condescending in tone. I've tried to eliminate the condescension, and answer some basic questions about why his arms look the way they do.
I could really use your assistance in editing the letter and getting your gut reaction to it if you received it. In the letter, I do not mention Vacterl, because that would require sharing a lot of information about B's medical status that I'm just not willing to give out to parents of other children (the preschool has it, however). Really, please post your comments. I have permitted anonymous comments just for this reason. I want your honest responses. Here is the letter:
I found the letter on this website, which I was excited to learn about. The draft on the website, however, is a bit condescending in tone. I've tried to eliminate the condescension, and answer some basic questions about why his arms look the way they do.
I could really use your assistance in editing the letter and getting your gut reaction to it if you received it. In the letter, I do not mention Vacterl, because that would require sharing a lot of information about B's medical status that I'm just not willing to give out to parents of other children (the preschool has it, however). Really, please post your comments. I have permitted anonymous comments just for this reason. I want your honest responses. Here is the letter:
March 16, 2009
Dear Friends,
Our son Brody is a new classmate in the 2’s room at xxxx preschool.
We’re writing this letter because many of Brody’s classmates will probably be curious about his arms and hands, and we want to make sure that everyone is comfortable with his limb difference.
Dear Friends,
Our son Brody is a new classmate in the 2’s room at xxxx preschool.
We’re writing this letter because many of Brody’s classmates will probably be curious about his arms and hands, and we want to make sure that everyone is comfortable with his limb difference.
Brody was born with bilateral radial club hands: specifically, he was born without the radius bones in both forearms and without thumbs. Thanks to Shriners Hospital, he has had several operations to try to help straighten his arms (which do not like to grow straight), and in January he had the first thumb pollicization surgery, in which his right index finger was moved into thumb position. In April, he will have the same surgery on his left hand. In an effort to satisfy natural curiosity, I'd like to tell you a little bit about Brody.
First of all, this is the way Brody was born. The doctors do not know how or why, but the latest research shows that Brody’s arms were probably growing this way approximately 35 days into the pregnancy. We’ve had luck explaining this easily to kids as, "That's the way Brody was born. His arms didn't grow quite right when he was in his mommy's tummy." Some children hear the physical explanation and go about their business without second thoughts. Sometimes, though, kids might want more details.
We’ve learned that the easiest way to help a child understand something like this is to remind them how we are all different from each other. We have had success talking with kids (Brody’s cousins and other classmates) by pointing out the obvious differences: hair, eyes, glasses, height, skin color, size of feet, etc. The list is endless. It's also a good idea to explain that Brody’s arms are not broken, painful, shameful, sad or frightening. They are simply different.
While Brody’s arms and hands are unique, Brody doesn't consider them “special” and we do not refer to them as such. Sometimes children will also be concerned about how Brody will do certain things with his unique hands. I usually remind them that he does all the same things they do, just in different ways. Brody has never had radius bones and 10 fingers, so he learns to do everything with what he has (and then shows us how he does it).
Once you get to know Brody, it's easy to forget he has unique hands. He adapts easily. He feeds himself, likes drawing and playing catch, loves Play Dough, washes his own hands, and wants to build towers with legos on a daily basis. We are teaching him that he should be proud of his “new thumbs” (as we are) and he will probably show them off if you ask. There are tasks he gets frustrated with but most of the time he takes challenges in stride and manages creatively.
I just wanted to let you know that we welcome conversation about our son and we look forward to getting to know you and your children.
Sincerely,
x
First of all, this is the way Brody was born. The doctors do not know how or why, but the latest research shows that Brody’s arms were probably growing this way approximately 35 days into the pregnancy. We’ve had luck explaining this easily to kids as, "That's the way Brody was born. His arms didn't grow quite right when he was in his mommy's tummy." Some children hear the physical explanation and go about their business without second thoughts. Sometimes, though, kids might want more details.
We’ve learned that the easiest way to help a child understand something like this is to remind them how we are all different from each other. We have had success talking with kids (Brody’s cousins and other classmates) by pointing out the obvious differences: hair, eyes, glasses, height, skin color, size of feet, etc. The list is endless. It's also a good idea to explain that Brody’s arms are not broken, painful, shameful, sad or frightening. They are simply different.
While Brody’s arms and hands are unique, Brody doesn't consider them “special” and we do not refer to them as such. Sometimes children will also be concerned about how Brody will do certain things with his unique hands. I usually remind them that he does all the same things they do, just in different ways. Brody has never had radius bones and 10 fingers, so he learns to do everything with what he has (and then shows us how he does it).
Once you get to know Brody, it's easy to forget he has unique hands. He adapts easily. He feeds himself, likes drawing and playing catch, loves Play Dough, washes his own hands, and wants to build towers with legos on a daily basis. We are teaching him that he should be proud of his “new thumbs” (as we are) and he will probably show them off if you ask. There are tasks he gets frustrated with but most of the time he takes challenges in stride and manages creatively.
I just wanted to let you know that we welcome conversation about our son and we look forward to getting to know you and your children.
Sincerely,
x
Wednesday, February 25, 2009
A new thumb
J and B flew to Salt Lake Shriners today for a clinic appointment.
J emailed me the following pics.
This is Brody and the Mike and Sully in the hospital.
This is Brody and Mike.
Doesn't it look really thumby? I love it. Plus it's like B is doing a hand model pose.
Brody still can't move it, and the surgeon said that was not unusual, it's probably still painful to even try. J also noted that the fingers are still very curved, but as I told him, they were to begin with, and the surgery wasn't supposed to fix the curving, so that's not surprising.
J emailed me the following pics.
This is Brody and the Mike and Sully in the hospital.
This is Brody and Mike.
This is Brody's new thumb.
Doesn't it look really thumby? I love it. Plus it's like B is doing a hand model pose.
Brody still can't move it, and the surgeon said that was not unusual, it's probably still painful to even try. J also noted that the fingers are still very curved, but as I told him, they were to begin with, and the surgery wasn't supposed to fix the curving, so that's not surprising.
Now we have to decide when to do the left hand thumb: our choices are apparently late March or late April. I'm completely unfamiliar with having a choice of surgery dates and we are actually completely undecided. I guess we'll decide in the next week or so.
Viva la thumb!
Wednesday, February 11, 2009
Some kind of wonderful
Some kind of wonderful.
That's what I said to myself when I saw this video. It's a video that was posted on the Vacterl Network parents group.
Alex, the young woman in the video, submitted the film for her fine art degree show project.
She has the same limb issue (I can't say the d word) that Brody has on her one side.
One parent who saw it called it poetry in motion. Another parent said they should show it to every parent of a child right after the child is born without thumbs. I agree with both of them.
And I'm going to encourage Brody to make a film of himself one day, maybe with the help of his cousin and my godson, Sam, already a filmmaker, so he can help parents and children dealing with this.
It really is a gorgeous film.
That's what I said to myself when I saw this video. It's a video that was posted on the Vacterl Network parents group.
Alex, the young woman in the video, submitted the film for her fine art degree show project.
She has the same limb issue (I can't say the d word) that Brody has on her one side.
One parent who saw it called it poetry in motion. Another parent said they should show it to every parent of a child right after the child is born without thumbs. I agree with both of them.
And I'm going to encourage Brody to make a film of himself one day, maybe with the help of his cousin and my godson, Sam, already a filmmaker, so he can help parents and children dealing with this.
It really is a gorgeous film.
Tuesday, September 16, 2008
Sometimes a thumb is JUST a thumb
I bought the above product for Brody as consolation for him not having the thumb surgery. (Because if he had had the surgery, he'd be in a cast and unable to take baths much less use finger paints in the bath).The other night we used it for the first time. As I was opening it, I noticed for the first time that the place where you poured the paint was the yellow plastic hand in the picture above. The perfectly formed five finger plastic hand.
My first reaction was a visceral recoiling - and the requisite anger, once again, that my son does not have radius bones, 8 fingers and 2 thumbs.
Then I had an epiphany of sorts: so what.
I had an English teacher in high school, Miss Smith, and whenever we wrote an essay, she made us include the "so what" of the subject book. As in, what is the higher purpose or symbolic point of this work of fiction? What does it really mean?
In the bathroom, I looked at the plastic hand, and I finally was able to say, So What.
I tried to figure out what it really means that Brody doesn't have thumbs right now. Or that he only has 4 fingers on each hand or that his arms are and will be shorter than most other peoples' arms or that his hands will probably continue to want to grow inwards at 90 degrees instead of out at 180 degrees.
Here is my answer: it doesn't mean anything. There is no greater purpose or nefarious point about it. There is no "so what" inherent in missing radius bones and thumbs.
It is just that. Missing bones and fingers.
And nothing more.
Which led me to back down from my imminent moment of despair when pouring paint into the yellow plastic hand.
So what if he's missing these things? So what? No one's life is absolutely perfect. These things do not define him. The important things, the things that really and truly matter, are already woven into Brody's life.
He will never ever doubt that he is loved. He is happy and healthy, thank God. He is safe. He has, at the age of 2, more wit and intelligence than some adults I have known. He has eyelashes that are almost an inch long and dimples that break my heart. He has already enriched this earth with his very existence and presence.
As a result, there is no way that I can acknowledge the greatness of Brody and simultaneously lament something as insignificant, in the grand scheme, as missing two bones and two digits.
And so I will not.
Saturday, July 19, 2008
Photos
Photos from last week's visit with my mom. Marilyn (my sis) and her kids (Jim & Steve) took Brody and me and Oma (my mom) to the "world famous" Tiny Town.....
Tiny Town is a miniature "town" through which a train runs. Little kids think it's the coolest. Here Steve is explaining to Brody about the buildings. . . .
Of course, there is also a playground. . .
Tiny Town is a miniature "town" through which a train runs. Little kids think it's the coolest. Here Steve is explaining to Brody about the buildings. . . .Of course, there is also a playground. . .
And if children do not behave, they are imprisoned. . .
For Sunday brunch we all went to Country Road cafe. Country Road is so good that you have to wait. . .
and wait . . .
Friday, July 11, 2008
Brody photos
Regardless of the time he wakes up, Brody has to come outside. If we don't let him, he will just stand at the back door and pound on it saying "outside outside outside!"
When we do let him, this is what happens.
When we do let him, this is what happens.
Which horse should I ride?
Brody's first boat ride. Sure, it was a paddle boat, but it still counts.
Thursday, June 19, 2008
Then and Now
The first photos of Brody, in the NICU, after we were finally able to hold him. All 3 pounds of him.
God he was little. Everyone said so at the time, but I didn't think so then.
The photo we sent to every single person we knew.
Resting at home, at last, after spending the first 8 weeks of his life in the NICU.
The first time he was casted he was about 3 months old - November 2006
More then and now. . . .
Then, I didn't tell strangers about Vacterl association. When they would ask, I mean. I didn't want to think about it. I would get sick to my stomach when someone would ask me how he was doing, health wise. Especially about how his kidney was doing. I stayed on Paxil an extra few months because I thought he'd need kidney surgery in May 2007.
Now, I tell people about radial club hands, vacterl association, and Brody's upcoming 8th surgery all the time. I even have a carepage for him to talk about his medical issues.
Then, I worried how Brody would hit all his milestones, walking especially. And talking. I actually worried that he didn't have enough words.
Now, having been shown by Brody -- repeatedly -- that he can figure out every single thing he needs to do all by himself, I no longer worry that he will be hindered in any way. The truly astounding part of this journey is that he has taught himself every thing. Sitting up, scooting, eating, using his hands, adapting with casts, adapting with fixators, standing, cruising, walking, stairs . . . the kid literally one day just looked at the stairs and started crawling up them, the whole flight, without either Jeremy or me helping him.
With external fixators on.
Four pins in each arm.
I always remember when I was pregnant with Brody and in the hospital with preeclampsia, that I got the feeling whenever they'd put the heart rate monitor and movement monitor on my stomach, and I'd sit there anxiously watching his heart rate and feeling him kick, that he was saying "Look at what I can do, see? Look at me? I can do it! I'm going to be okay, mama! Look at what I can do!"
The thing is, when I felt he was telling me that, we didn't know anything about Vacterl association or that Brody had any of the medical issues he has. Hell, I didn't even know whether he was a boy or a girl. I called him Zoe Brody, because Zoe was his girl name.
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