Hi everyone,
I'm posting a couple of e-mails from readers recently if anyone is interested or has any advice/comments/information for them. Thanks:)
Blessings:)
Amy
Hello. I am Danielle Gandee of Temperance, MI and we are a Cerebral Palsy Family as well. I have a son, Braden, age 3 and he has CP, a spastic hemi/tri (both legs and his right arm). I believe we have a therapist in common...Ann Nagle?
We've been following your story and would love to chat more sometime. It is inspiring and refreshing to hear such a positive outcome.
Sincerely,
Danielle Gandee
sndgandee@aol.com
Hi Amy,
It is nice to know that the amount of therapy will slow down someday.
Congrats for all that you/he/your whole family have achieved!
If you don't mind sharing I would love to hear more details of your experiences. I would like to know your opinions of good therapists, doctors, treatments, surgeries, braces, activities, medications, clinical trials, HBOT, sports, youth groups, anything that impressed you as well as all the things that did not work.
And I would love to know how you started your blog. I want to start one of my own soon but am lost on how to begin.
Here's a little background on us...
My husband, Sam, and I are 34. We live in Temperance, MI with our four children. My oldest is 10 and the youngest is 2. We have 3 boys (Hunter, Braden and Kellen) and my 9 year old (Kerragan) is our only girl. My Braden is 3 1/2. After a difficult pregnancy he was born at almost 32 weeks and weighed 4 lbs 8 oz. He spent the first month in the NICU at St. V's. They told us there that he would have CP. He has been in therapy with Ann since he was 3 months. He is in therapy 3-7 times a week. He see a few different therapists such as Kelly PT, Michelle OT, and Deb ST at St. V's/Mercy Pediatric therapy on Sunforest Ct; Michelle for OT also see's him for Hippotherapy at Stepping Stones in Monroe, MI; sees Ann at Rehab Dynamics and she coordinates all his therapists for us as well; he sees Kim Benner PT and Carolyn Rhodes OT with the Monroe County ISD; in the fall he goes to U of M for a block of constraint therapy known as CHAMPS; and in the winter and spring he does the Special Needs Aquatic Program with Buffy through Total Rehab at Bedford's Francis Family YMCA, . His doctors are...McBride of Franklin Park Peds as Primary Care, Burke is Ortho, Julie Miller and Virgina Nelson as Ped rehab and physical medicine and Dr Cameron as neurologist. Sees Dan Cole or his AFO's and knee immobilizers. He has had 2 rounds of Botox in his Hamstrings and adductors, May of 09 and Nov 09.
Braden has been walking with his walker and pulling himself up to standing (but must hold on to something at all times)for a little over a year now. This past year he learned how to get into "W" sitting, learned to crawl on hands and knees (before this he would "commando crawl" as his primary mode of getting around), and learned to sit himself up from laying on his back in the last few weeks !!! :) In the house he crawls as his primary mode of movement.
He is very fun and playful and a real trooper, the hardest worker I could imagine. He seems to have typical intelligence and is very verbal. (we are working on annunciation and volume in Speech.)
Now that he is getting older I am trying to find the next level of activities-interactions.
I am looking to find other families with similar experiences that have similar attitudes as ours. Basically I feel...yes, it sucks to have CP (for the whole family as well as the one diagnosed with it) but this is the only life we've got so lets make the best of it and live it fully! We do not want pity from outsiders and will not tolerate self-pity. Instead, I welcome anyone to look at our experience and draw off our love, positive attitudes, and hard work. Braden will inspire the world!
I look forward to hearing from you and your family,
Sincerely,
Danielle
Amy,
I was so excited to see you blog. Ellen from Total Rehab at Toledo told me about your family. She has been saying for about the last year that my son Gabe reminds her so much of you Nick. With his disabilities and his demeanors even though he is only 4. When I finally looked at the BLOG I think they are twins in two different time frames.
Gabe has dipalegic CP of the lower extremities and profound hearing loss in his right ear in which he uses a hearing aid and is totally deaf in his left ear in which he has a cochlear implant.
Your family is such an inspiration to people. Thank you so much for all of the links that will help in the future.
ROBIN BLUM
Friday, February 26, 2010
Thursday, February 18, 2010
Comment from Dan Wilkins 2/18/10
Hi everyone,
I received this comment from Dan Wilkins re: Nick's Senatorial Citation via e-mail to Nick and Coach Boggs. We were having some trouble posting it on the blog, so I copied the e-mail and is it below.
Blessings:)
Amy
I am so proud of all involved here. Nick, I've always known you were destined for something bigger, and you just keep plugging toward that something every day. Matt, both you and Nick are deserving of this recognition, you, especially, because you had a mind open enough to glimpse and share Nick's vision and passion for what was possible. What you have done together is touch a family, a team, a school and an entire community (including, apparently, a Senator and Senate) and change them forever. And you've touched each other, as well.
This is big, big stuff; life-altering and affirming stuff. It is a shining example of what we at The Ability Center believe can happen in the lives of so many; in communities across Ohio, the country and around the world, if only people would, like you, challenge what they believe and see what is truly possible. It is always about valuing high expectations over low and taking the risk.
Anais Nin once said, "And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom." Nick: I am honored to watch you blossom.
My mom used to say, "If we believe in our children, they will believe in themselves." Matt: Thank you, thank you, thank you, for believing in and supporting Nick's "big dream". I sit in awe.
In Peace, Understanding and Change,
Dan Wilkins
Director of Public Relations and Community Partnerships
The Ability Center of Greater Toledo
5605 Monroe Street
Sylvania, OH 43560
419-885-5733
866-885-5733 (toll-free)
419-290-6377 (cell)
abilitycenter.org
I received this comment from Dan Wilkins re: Nick's Senatorial Citation via e-mail to Nick and Coach Boggs. We were having some trouble posting it on the blog, so I copied the e-mail and is it below.
Blessings:)
Amy
I am so proud of all involved here. Nick, I've always known you were destined for something bigger, and you just keep plugging toward that something every day. Matt, both you and Nick are deserving of this recognition, you, especially, because you had a mind open enough to glimpse and share Nick's vision and passion for what was possible. What you have done together is touch a family, a team, a school and an entire community (including, apparently, a Senator and Senate) and change them forever. And you've touched each other, as well.
This is big, big stuff; life-altering and affirming stuff. It is a shining example of what we at The Ability Center believe can happen in the lives of so many; in communities across Ohio, the country and around the world, if only people would, like you, challenge what they believe and see what is truly possible. It is always about valuing high expectations over low and taking the risk.
Anais Nin once said, "And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom." Nick: I am honored to watch you blossom.
My mom used to say, "If we believe in our children, they will believe in themselves." Matt: Thank you, thank you, thank you, for believing in and supporting Nick's "big dream". I sit in awe.
In Peace, Understanding and Change,
Dan Wilkins
Director of Public Relations and Community Partnerships
The Ability Center of Greater Toledo
5605 Monroe Street
Sylvania, OH 43560
419-885-5733
866-885-5733 (toll-free)
419-290-6377 (cell)
abilitycenter.org
Wednesday, February 17, 2010
Nick-Senatorial Citation 2/17/10
Hi everyone,Nick received a Senatorial Citation today from Senator Teresa Fedor after she saw the article on Nick by Dave Hackenburg at The Toledo Blade. (I posted it on the blog in January.) It says it is "Honoring Nick Hyndman For His Extraordinary Achievements". She said, "Overcoming adversity of any form is difficult and you have done it with such vigor, commitment and success. Your talents in music, poetry, academics, and particularly wrestling are the foundations of a vibrant future in whatever career path you choose. I hope you understand the sky is the limit" (by Teresa Fedor) Anyhow, it was so nice and we're proud of Nick. Nick's Head Coach, Matt Boggs, also received one and they took a nice picture together today. (above) Anyhow, below is the e-mail I got from Coach Boggs:
I received an envelop in the mail at school today that was quite shocking. It was sent from the Senate Office. Upon opening it, I realize that there were two wonderfully matted certified letters from Senator Teresa Fedor congratulating Nick and I for
the efforts made these past few months. I had a picture taken with Nick and gave him the original envelop and his "Senatorial Citation". It is and will remain quite an honor for me to receive such an award but most importantly, to work with Nick.
Thank you for all your support and the hard work you and your family do with Nick on a daily basis.
I have attached the picture. Feel free to do with it what you like.
Sincerely,
Matt Boggs
English Teacher
Head Wrestling Coach
Perrysburg Messenger Journal Article by Deb Buker 2/17/10
Hi everyone,
There is an article in the Perrysburg, Ohio newspaper today, The Perrysburg Messenger Journal (http://www.perrysburg.com/) about Nick and his wrestling at Perrysburg High School. The article is written by Deb Buker and she did a wonderful job with it! I tried to see if I could find a link to the article and there is only a small part of the article on their web site and it says you can subscribe to the paper to see the full article. I wish I could find some way to post the entire article on the blog! If I do find a way, I will. Unfortunately, I can only post the following part of the article which is on their web site right now. Thanks so Deb Buker for listening and taking an interest in Nick and our family! Below is what I can find so far from the article:
‘I want to be challenged and pushed to my limits’
PHS student Nick Hyndman takes to the wrestling mat–Unusual? Yes, Nick has CP
Since sixth grade, Perrysburg High School junior Nick Hyndman has had a dream–to participate in a high school sport, to be a Yellow Jacket athlete.
Sports are his passion. With hard work, practice and determination, a dream of being on a high school athletic team is attainable for most students. And the high school junior certainly has a good work ethic and motivation, but unlike most high school athletes, Nick has a disability. At five months old, he was diagnosed with cerebral palsy.
“The reason I call it a dream is because of my disability. Realistically, I am not good enough to compete at the level of the kids on school teams,” the high school student wrote last fall in a classroom assignment. “But, I believe that I do have the ability to compete in more advanced leagues than I’m in now. I want to be challenged and pushed to my limits, so it’s hard to find a league that’s the perfect amount of challenge for me.
“Ever since I’ve had this dream, I’ve tried doing some research. I’ve tried to find people who had physical disabilities and actually played in a sport for their schools. As a result of my research, I found two cases where a teen in high school actually had the ability to play on a team. One guy who I saw in person, Steven Klorer, was on the Clay High School wrestling team, and he had spina bifida and had no use of his legs. The other guy played a defense position in football and he didn’t have any legs.
“So, after I did my research, I’ve told myself ever since, ‘if they can do it, why can’t I?’ I am still chasing after this dream, at the moment, I am very close to pursuing it. I want to be on my school’s wrestling team. The coaches are fine with it and the only thing that is standing in the way is I have to get my doctor’s approval. Hopefully, he gives me a chance.”
Blessings:)
Amy
There is an article in the Perrysburg, Ohio newspaper today, The Perrysburg Messenger Journal (http://www.perrysburg.com/) about Nick and his wrestling at Perrysburg High School. The article is written by Deb Buker and she did a wonderful job with it! I tried to see if I could find a link to the article and there is only a small part of the article on their web site and it says you can subscribe to the paper to see the full article. I wish I could find some way to post the entire article on the blog! If I do find a way, I will. Unfortunately, I can only post the following part of the article which is on their web site right now. Thanks so Deb Buker for listening and taking an interest in Nick and our family! Below is what I can find so far from the article:
‘I want to be challenged and pushed to my limits’
PHS student Nick Hyndman takes to the wrestling mat–Unusual? Yes, Nick has CP
Since sixth grade, Perrysburg High School junior Nick Hyndman has had a dream–to participate in a high school sport, to be a Yellow Jacket athlete.
Sports are his passion. With hard work, practice and determination, a dream of being on a high school athletic team is attainable for most students. And the high school junior certainly has a good work ethic and motivation, but unlike most high school athletes, Nick has a disability. At five months old, he was diagnosed with cerebral palsy.
“The reason I call it a dream is because of my disability. Realistically, I am not good enough to compete at the level of the kids on school teams,” the high school student wrote last fall in a classroom assignment. “But, I believe that I do have the ability to compete in more advanced leagues than I’m in now. I want to be challenged and pushed to my limits, so it’s hard to find a league that’s the perfect amount of challenge for me.
“Ever since I’ve had this dream, I’ve tried doing some research. I’ve tried to find people who had physical disabilities and actually played in a sport for their schools. As a result of my research, I found two cases where a teen in high school actually had the ability to play on a team. One guy who I saw in person, Steven Klorer, was on the Clay High School wrestling team, and he had spina bifida and had no use of his legs. The other guy played a defense position in football and he didn’t have any legs.
“So, after I did my research, I’ve told myself ever since, ‘if they can do it, why can’t I?’ I am still chasing after this dream, at the moment, I am very close to pursuing it. I want to be on my school’s wrestling team. The coaches are fine with it and the only thing that is standing in the way is I have to get my doctor’s approval. Hopefully, he gives me a chance.”
Blessings:)
Amy
Saturday, February 13, 2010
Added Links
Hi all-
I've added a couple of new links under "Useful Links". One is The Greater Toledo Challenger Little League (www.gtcll.com) , which Nick has played for since the age of 6, or 10 years. It is baseball league for kids with disabilities and they have a web site. Nick LOVES it. He has decided that this year, he'd like to help out with coaching and being a "buddy" for other kids instead of being a player for the first time. He says his favorite thing is watching the faces of the kids while they play. I hope he doesn't miss playing but we're respecting his decision and so glad he'll still be involved.
I also added The Official Geri Jewell Website. Geri is an actor (Facts of Life and much more.....), comedian, speaker, author. I've enjoyed her and her sense of humor for years. Her website is www.gerijewell.com. She is an individual living well with cerebral palsy by the way too.
Nick is helping out at a Varsity Wrestling Meet today, all day, with Greg. Isabella and I are hanging out with the dogs and enjoying some "girl" bonding time. We're looking forward to having a nice dinner tonight for Valentines Day together as Greg is working tomorrow. My three favorite valentines to spend my night with, sounds great!:)
Blessings:)
Amy
PS- If anyone has a link or website they want me to add that they feel may be helpful or of interest to someone, let me know. Thanks!
I've added a couple of new links under "Useful Links". One is The Greater Toledo Challenger Little League (www.gtcll.com) , which Nick has played for since the age of 6, or 10 years. It is baseball league for kids with disabilities and they have a web site. Nick LOVES it. He has decided that this year, he'd like to help out with coaching and being a "buddy" for other kids instead of being a player for the first time. He says his favorite thing is watching the faces of the kids while they play. I hope he doesn't miss playing but we're respecting his decision and so glad he'll still be involved.
I also added The Official Geri Jewell Website. Geri is an actor (Facts of Life and much more.....), comedian, speaker, author. I've enjoyed her and her sense of humor for years. Her website is www.gerijewell.com. She is an individual living well with cerebral palsy by the way too.
Nick is helping out at a Varsity Wrestling Meet today, all day, with Greg. Isabella and I are hanging out with the dogs and enjoying some "girl" bonding time. We're looking forward to having a nice dinner tonight for Valentines Day together as Greg is working tomorrow. My three favorite valentines to spend my night with, sounds great!:)
Blessings:)
Amy
PS- If anyone has a link or website they want me to add that they feel may be helpful or of interest to someone, let me know. Thanks!
Wednesday, February 10, 2010
February 10, 2010 Update / Team Hyndman
Hi everyone,
Nick and Isabella are having their second snow day (which they LOVE) and I, Amy, am just trying to get over some cold/sore throat. It's been pretty snowy here in Northwest Ohio and although it's pretty when you are inside looking out, it's not fun when you have to drive in it. I guess it's part of living in this area though. So, we are just enjoying it and our time together today.
Nick is almost done with wrestling season. He has actually wrestled in his last match and is just practicing this week and next with the varsity wrestlers who have a big match coming up this weekend. I think Nick is a little disappointed it is ending and plans to wrestle his senior year next year too. To think that five months ago, we didn't even know of Nick's interest in wrestling, that he COULD do it, or that any of this would happen for him. It's been a really positive experience and we've learned a lot. Mostly we've learned to trust Nick's plans for himself and his own body and to never underestimate what is possible with Nick. I've always said I believe Nick has "endless possibilities" and I've always believed that even when people thought I was being unrealistic, I knew they were wrong. Sure, he may have to find different ways to do things, but he CAN DO so much more than he can't do. I'm sure we can't even imagine what Nick is capable of accomplishing in his future and I now know that whatever it is, he has a bright future ahead of him.
I always used to think the thing that was the most frightening to us was the unknown (with Nick). How will things turn out? What will happen to him? I've realized in recent years that I don't need to be afraid of the future and the unknown and actually, the unknown can be the most rewarding things in life. (wrestling is just one example of many!)
Isabella is still loving dance (even more) and school and is a busy, social girl:) She's her brother's biggest cheerleader too.
I just started a new job as a Social Worker at Hospice of Northwest Ohio and I've VERY excited about this and adjusting to being back to work full time right now. It's a privilege to be involved with individuals and their families at the end of their lives and to try to make it the best journey possible when you can. The people at Hospice are so positive and it's a great, supportive environment to work in.
Greg continues to work hard, always, and is going to school too. So, I'm sure many of you can relate to our busy family life. Our favorite thing to do then is to spend as much time together as we can. I for one feel like time is going by too fast and want to enjoy every second I can with my kids and husband! Luckily, the kids seem to still want to spend time with us, which I understand may not last forever, but we hope it does!
That's the latest update on Team Hyndman. I keep thinking, maybe we should get some shirts made that say "Team Hyndman" (although I'm not sure the kids would wear them?????? LOL!)
Blessings:)
Amy
Nick and Isabella are having their second snow day (which they LOVE) and I, Amy, am just trying to get over some cold/sore throat. It's been pretty snowy here in Northwest Ohio and although it's pretty when you are inside looking out, it's not fun when you have to drive in it. I guess it's part of living in this area though. So, we are just enjoying it and our time together today.
Nick is almost done with wrestling season. He has actually wrestled in his last match and is just practicing this week and next with the varsity wrestlers who have a big match coming up this weekend. I think Nick is a little disappointed it is ending and plans to wrestle his senior year next year too. To think that five months ago, we didn't even know of Nick's interest in wrestling, that he COULD do it, or that any of this would happen for him. It's been a really positive experience and we've learned a lot. Mostly we've learned to trust Nick's plans for himself and his own body and to never underestimate what is possible with Nick. I've always said I believe Nick has "endless possibilities" and I've always believed that even when people thought I was being unrealistic, I knew they were wrong. Sure, he may have to find different ways to do things, but he CAN DO so much more than he can't do. I'm sure we can't even imagine what Nick is capable of accomplishing in his future and I now know that whatever it is, he has a bright future ahead of him.
I always used to think the thing that was the most frightening to us was the unknown (with Nick). How will things turn out? What will happen to him? I've realized in recent years that I don't need to be afraid of the future and the unknown and actually, the unknown can be the most rewarding things in life. (wrestling is just one example of many!)
Isabella is still loving dance (even more) and school and is a busy, social girl:) She's her brother's biggest cheerleader too.
I just started a new job as a Social Worker at Hospice of Northwest Ohio and I've VERY excited about this and adjusting to being back to work full time right now. It's a privilege to be involved with individuals and their families at the end of their lives and to try to make it the best journey possible when you can. The people at Hospice are so positive and it's a great, supportive environment to work in.
Greg continues to work hard, always, and is going to school too. So, I'm sure many of you can relate to our busy family life. Our favorite thing to do then is to spend as much time together as we can. I for one feel like time is going by too fast and want to enjoy every second I can with my kids and husband! Luckily, the kids seem to still want to spend time with us, which I understand may not last forever, but we hope it does!
That's the latest update on Team Hyndman. I keep thinking, maybe we should get some shirts made that say "Team Hyndman" (although I'm not sure the kids would wear them?????? LOL!)
Blessings:)
Amy
E-mail from reader
Hi all,
I received this e-mail from a blog reader (thank you Donna!) and I wanted to share it with you in case anyone is interested in their story or has any advice/information she may find helpful that may be different from any information I have posted on siblings. Thanks:)
Blessings:)
Amy
Hi Amy,
My name is Donna Chimis, I found out about you and your family from a woman named Anne Weisblatt of Hope's Friends. I have a 12 yr.old son with quadriplegic cerebral palsy who is totally depended on adult care. I also have a 13 yr. old daughter who really has a hard time with some of Matthew's health issues. As I am writing to you Matthew is in the hospital for a spinal fusion. This hospital stay has been harder than most of our stays because Matt's surgery had to be done in 3 parts. The 1st surgery was Jan 27th, the 2nd was Feb. 4th and the last part of the surgery will be tomorrow. This surgery has been the hardest for my daughter. I was readying a story on your blog written by Isabell and how she feels and what happens to her during a hospitalization. As I was reading it I could not get over how much I was also listening to my daughter Ashley. She often says alot of what Isabell had said during Matt's hospitalizations. She is always worried about him, wanting to see him everyday, having to stay by a family member. or neighbor, or friends house all while going to school, playing volleyball and getting homework. I have tried to get Ashley involved in sibshops but she is too old for the ones that are in our area. Does Isabell have anyone that she talks to that is around her age? I have not shared your blog with my daughter yet, I will have her look at it and see what she thinks, may be won't feel so alone. I would like to make an entry onto your blog but I am not very good at figuring out how to do that. It's probably very easy. Maybe I asked Ashley to help me with that.
When I was looking at your blog I watched the latest video of Nick at his wresting meet. Please tell him great job from our family, what an inspiration he is. Thanks for putting together your blog, it is nice to know that family like ours are not alone.
I will continue to look at your blog but I hope it is ok if I send an e-mail every once in a while.
Donna Chimis
I received this e-mail from a blog reader (thank you Donna!) and I wanted to share it with you in case anyone is interested in their story or has any advice/information she may find helpful that may be different from any information I have posted on siblings. Thanks:)
Blessings:)
Amy
Hi Amy,
My name is Donna Chimis, I found out about you and your family from a woman named Anne Weisblatt of Hope's Friends. I have a 12 yr.old son with quadriplegic cerebral palsy who is totally depended on adult care. I also have a 13 yr. old daughter who really has a hard time with some of Matthew's health issues. As I am writing to you Matthew is in the hospital for a spinal fusion. This hospital stay has been harder than most of our stays because Matt's surgery had to be done in 3 parts. The 1st surgery was Jan 27th, the 2nd was Feb. 4th and the last part of the surgery will be tomorrow. This surgery has been the hardest for my daughter. I was readying a story on your blog written by Isabell and how she feels and what happens to her during a hospitalization. As I was reading it I could not get over how much I was also listening to my daughter Ashley. She often says alot of what Isabell had said during Matt's hospitalizations. She is always worried about him, wanting to see him everyday, having to stay by a family member. or neighbor, or friends house all while going to school, playing volleyball and getting homework. I have tried to get Ashley involved in sibshops but she is too old for the ones that are in our area. Does Isabell have anyone that she talks to that is around her age? I have not shared your blog with my daughter yet, I will have her look at it and see what she thinks, may be won't feel so alone. I would like to make an entry onto your blog but I am not very good at figuring out how to do that. It's probably very easy. Maybe I asked Ashley to help me with that.
When I was looking at your blog I watched the latest video of Nick at his wresting meet. Please tell him great job from our family, what an inspiration he is. Thanks for putting together your blog, it is nice to know that family like ours are not alone.
I will continue to look at your blog but I hope it is ok if I send an e-mail every once in a while.
Donna Chimis
Friday, February 5, 2010
Youtube video of Nick going all three rounds in wrestling match!
http://www.youtube.com/watch?v=Cc0p7jzcuwQ
Hi everyone,
Here is a video taken by our friend, Pat Detzel, of Nick's wrestling match against Northview last night. (2-4-10)
It was amazing. Nick didn't win the match as far as points go, but he went all three rounds, a first, and a goal of his, so he was our winner. As he kept going, we were all shocked (in the best way!) and I was crying ( I could not control it!) like a baby. I'm sure that embarrassed Nick, but it is my "right" as his Mom:) Anyhow, we are so proud of Nick!
Blessings:)
Amy
Hi everyone,
Here is a video taken by our friend, Pat Detzel, of Nick's wrestling match against Northview last night. (2-4-10)
It was amazing. Nick didn't win the match as far as points go, but he went all three rounds, a first, and a goal of his, so he was our winner. As he kept going, we were all shocked (in the best way!) and I was crying ( I could not control it!) like a baby. I'm sure that embarrassed Nick, but it is my "right" as his Mom:) Anyhow, we are so proud of Nick!
Blessings:)
Amy
Wednesday, February 3, 2010
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