Son is amazing 16 year old with only a right hand.

Jana Kaye - posted on 08/19/2011

Sam has started his foundation: NubAbility Athletics! Find the page on fb and "like" to learn more. His goals are to encourage, inspire and train kids who are congenital and tramatic amputees to compete in organized sports and to provide a network for limb different athletes.

Jana Kaye - posted on 05/07/2011

WSIL TV 3 News did a story on Sam this week. He signs with Greenville College to play baseball on May 16th. No Limits! here is the link to the video http://www.facebook.com/l.php?u=http%3A%...

Jana Kaye - posted on 03/10/2011

Hi Leeanna! I think I posted this before, but there is a blog called Born Just Right by Jen Reeves that would be of interest to you. Jen's daughter Jordan has the same difference that yours does. She is an awesome communicator. I think you would enjoy her blog. www.bornjustright.com

Jana Kaye - posted on 03/10/2011

Hi Karen. I do get alerts when there is activity on this blog. So I am glad to chat anytime. There was lots of activity in 2010, so please look back in the blog and see if anything you find is helpful. Sam is now 18 and a senior in high school. We are so busy in life right now that I have not updated on here as I should. We also have a new blog in the works. We are trying to find some time where we can get up and running. I will post here when it is accessible. Sam is having a great senior year. He had a good football season. He chose not to play basketball for the first time ever, in order to concentrate on his pitching over the winter. His first baseball game is March 14th. We are prayerful that all of his hard work will pay off. Sam has done very well academically also. He has a desire to go to Greenville College in Greenville, IL. Greenville is a small private Christian College. Sam has been asked by the coach to play baseball there. We are going to give it a few more weeks before we make the decision on to sign or not. In the meantime, I would love for all of you to look up Camp No Limits and sign your family up for a camp. I went with Sam last summer to the MO one. He was a counselor. It was truly an incredible experience for all there. If any of you would ever want to discuss anything privately, please feel free to message me or email jkayekuhnert@hotmail.com. Be Blessed!

Leanna - posted on 03/10/2011

Hi Karen! I am here to chat if you need to. I have not posted in a long time. Life just gets so busy. My daughter will be three at the end of the month and she also is missing the lower half of her left arm. Hopefully this September she will be starting pre-school herself.

Karen - posted on 03/09/2011

I was so excited to finally find a great blog spot for parents with children with a limb deficiency, but I just noticed that the last post was in 2009. Is this group still chatting? I have a 2 year old son who will be 3 in May. Patrick was born without his right hand. I am always looking for people to talk to, answers, advise and open to suggestions. Patrick will start preschool this year and I wanted to get some much needed advice. I hope to find someone to chat with. THANKS! Karen

Jana Kaye - posted on 08/05/2010

Google Josh Kennison and watch all of his news reports! He is a friend of Sams that counsels at Camp No Limits, where Sam is hoping to be the sports director next year. Josh is missing both hands and feet and is truly the most amazing individual I have ever met. LOVE HIM!!!

Jana Kaye - posted on 07/23/2010

I want all of you to visit www.nolimitsfoundation.org. and join the Camp No Limits FB page. My son Sam was able to be a counselor at the St.Louis camp earlier this summer. His athletic schedule has kept him from the other camps. But next year, unless he is playing college baseball, up to God, then he will be the sports director at all of the camps. Sam is building a new website for kids and families with limb difference. I will let all of you know when it is up and running. We have trademarked the name of his foundation called NubAbility. He is so excited about the direction he is going in. More to come.

Sarah - posted on 06/17/2010

This site is amazing! I have been looking for a place to talk about my son. He was born with a partial left hand. He has half of his palm and little "nubbins" where his fingers would be. This came as a total shock to us, but at 4 months he is proving that be will not let anything stop him. I was so excited to find this group of moms to chat with

Ashley - posted on 04/12/2010

My son is going to be 5 months next week and he was born without his left hand and forearm. He has an elbow tho. When we first found out from his ultrasound we were scared and worried; not because we thought he wouldn't be able to do anything, but because we worried what obstacles (teasing) he will have to go through in life. Nothing is harder than seeing your child hurt and there is nothing you can do about it. We have been back and forth with University of Michigan Health Services and debating about prosthetics. We have an appointment this week with them for prosthesis. However, my decision will be to hold off until he is older and maybe make that decision for himself. I do not want him to become dependent on a prosthetic, I want him to learn to use it on his own. Right now he's learning how to crawl, and it's hard because I think if he had the hand it would be pulling himself around. But he'll figure it out. He still amazes us every day and is the happiest baby that I have ever seen!

Jana Kaye - posted on 04/07/2010

Welcome Sarah! He is absolutely gorgeous! I'm certain all of your questions have been discussed in previous posts. I know it's a lot of reading to do but skim over it in your free time. I'm sure the conversations will bring to mind even more questions. Through everything, even the darkest of days, our faith has been our rock. God knew him when he was in the womb! Keep in touch!

Sarah - posted on 04/06/2010

Glad I found this group. My son was born with a partial left hand, nubbins instead of fingers and a little thumb. i found out while i was 20 weeks pregnant and we were devasted, almost like we had gone through a miscarriage. But we moved on and are now blessed with a special little man and I am so glad he is in our life. He is now 6 months old and i always get teared eyed when i see him do things with his left hand. I will always be strong for him and I know some tough days are ahead. But I will always tell him he can do anything he wants.

How did you handle all the staring? Also is there something you did when your kids started school? Did you have to advise the teachers in any way?

I appreciate this thread and i hope there are many more posts.

Jana Kaye - posted on 03/30/2010

Leann, it is ball season again! I hope your granddaughter is playing again. Keep us updated.

Kate - posted on 01/13/2010

Love it Jana!!! Thanks for the encouragement!

Jamie - posted on 11/11/2009

Gosh, I don't even wanna think about that!!! Just 4yrs...Man my babies are growin' up way to fast.......

Jana Kaye - posted on 11/09/2009

Just wait till he drives and wants to eat and drink and talk on the phone just like everyone else!!! Sheeesh!

Jamie - posted on 11/06/2009

We have always been open with Jacob about his hand and the docs. His reg. doc made him an appt in Louisville but we did not keep it..As requested by Jake.! I've been talked about alot for that and our family doc got pretty upset. He sees a specialist at the Shriners in Lexington and said that he really didn't want to go, that he was happy and fine the way he is and that he was satisfied with hisself and he could do everything he wanted and asked if we would call and cancel. So I did...people told me he was to young now to make those decisions but I feel its his hand and he's the one that knows how difficult things can be so why not listen. And yes Jacob knows all about Jim Abbott. I think thats so woderful the kids have someone to look at and say hey if they can I can too. Like dirt bike racing, I know he can do it and he's good at it....It's just the part of me that never wants to see him wreck or get hurt. I've watched him wreck and flip and slide and roll then just get up and get back on!!!! Thought I was havin' a heart attack but he said "MOM, I'm fine if you'd just calm down cause your really freaking me out...." Thanks for replying nice to have someone else to talk to sometimes thats been there done that..

Jana Kaye - posted on 11/06/2009

Thank you for your post Jamie! Yes, I can see how similar your amazing boy and mine are. Sam also loves to hunt with both bow and guns. He got the first deer of the archery season last weekend. He is currently in the Illinois high school football playoffs. He plays tight end. He is also currently preparing for the upcoming basketball season as much as he can. His schedule leaves little time for hunting, so he said he made the most of it last weekend. Sam is currently working on a research paper on Jim Abbott for his Junior English class. I hope I can post it here. If you haven't heard of Jim Abbott, you and Jake should do a search on him. He is inspirational. Did you take Jake to Kleinert Hand Clinic in Louisville? That is where we took Sam and they "followed" him until he was 5. Take care, and good luck with the dirt bike racing. Sometimes we really have to "let go" with our worries!

Jamie - posted on 11/04/2009

I've been reading through some of the post and replies on here and boy have the memories started coming back. My son Jacob is 12 and in the 7th gr. He's smart, and amazing!!! Jacob was born premature and in the nicu for a little over a month. He had the whole nine yards......everything from the iv's, feeding tubes, breathing equip. All of it, including a "little hand" as we call it. He has a partial right palm and no fingers on his right hand. He had 5 little nubs at first but after his first and only surgery at 9 months old they are no longer there. He plays football, baseball, basketball, loves the outdoors shooting his guns and bow&arrows.His favorite though would be his dirtbikes and atv's..... He is wanting to start racing his dirtbike.....When Jake was sick I made up my mind that if I got to bring him home his hand would be the least of my worries. In 12 years he has taught me more about acceptance, love, courage..............the list could go on and on.......than I think I could ever teach him. It may take him alittle longer to do something sometimes but he does it.....his way. If anyone would like to chat just buzz me....jlynn452@yahoo.com....I'm a stay at home mom. We live in the beautiful hills of Eastern KY. All of God's children are perfect....in their own perfect ways:)

Jana Kaye - posted on 09/14/2009

Anytime Liz! Sam also would be willing to answer any questions. He is working hard in Varsity football right now. He is having to battle for his starting spot against another kid whose older brother was a football standout. Sam caught plenty of touchdown passes in his fr and jv programs, but he is finding he is having to once again, work twice as hard to get the same amount of respect (confidence really) as any other player. His joy is in tact, and however it turns out for him, that is what will carry him through. That is the very best thing we can do for these kids- encourage their joy.

Liz - posted on 09/14/2009

Jana, thanks so much for sharing that. Our 7 month son has a thumb on his left hand, but no fingers. He already is amazing me and most of the time I totally forget that his hand is different from others. There are times that I do worry about the obstacles ahead both for him and for us as parents. I know as long as he is loved and treated with respect and encouragement he will do great things! I might be coming to you with questions!! hehe THank you again!

Jana Kaye - posted on 07/25/2009

You will and you will also learn to ignore ignorance. Your daughter will learn to react as you do. I love the name Elsie!!!

Leanna - posted on 07/25/2009

Thank you for your response. I am glad that I found this site. Sometimes it feels like I am all alone and making decisions about something that I know nothing about, so I am glad that everyone here is willing to share their stories. I have been telling children that we meet that Elsie was born that way and then point out something different about the child. Hoping maybe they might realize that he/she is different too. Most of the time it works just fine. It is the rude and cruel adults and older children that I haven't figured out yet. Usually I am too mad and shaking to say anything to them. I just hope that I can settle down and say something in defense of my daughter someday!

Jana Kaye - posted on 07/25/2009

Leanna, your daughter is a cutie! There really are dumb people in this world! As much as I'd like to tell you "forgetaboutit", the fact is my christian values have been tested many times in responding to stupid questions or comments. The best was when the nurse for the kindergarten examination at school asked Sam, "What hand are you?". I still crack up thinking about it! Sam turned and looked at me with a "is this lady for real" look and I said "he's ambidexterous(sp?)". I made my point. I have said when he first started in organized sports in response to cruel comments, "His name is Samuel Kuhnert. Remember it, because you'll wish you were his friend someday." That probably wasn't the nicest response, but nobody know the determination of a child like their mama. I guess my best response to inquiry has been "Don't know why. Just is. God made him perfect for a reason." Sam's favorite response since he could talk, "Shark attack!"

Leanna - posted on 07/24/2009

Hi! My daughter was born without the lower half of her left arm. I can see that she can and will succeed at everything that she puts her mind too. My problem is (and was wondering if anyone has suggestions) how do I answer peoples questions? Not only that but what do I say to people who are just downright cruel? Most people are fantastic, it is just those certain few that I would like to umm I guess educate. If anyone has found something that has worked for them please let me know. Thank you.

Jana Kaye - posted on 05/08/2009

http://www.superhands.us/pages/heroes.ht... This is the link to Sam's profile and the other Superhandheroes. This is an awesome networking site! Check out the links page. Also, for those of you who have school age kids, we bought this typing program for computers for our school when Sam was in the 2nd grade. He types all of his own papers for school. onehandedtyping.com

Jana Kaye - posted on 05/03/2009

You are very welcome! My son and his friends say the power is in "The Nub". And they all get their "nucks" with their elbows and his nub before the games. It has taken years of his not giving up and working hard to get to this point in athletics, but his perseverence and our constant ecouragement and "all things are possible with God" attitude never let him quit. On the technical standpoint of playing ball, learning to transition the glove from the nub to the hand and back is the biggest hurdle. Sam's first glove had wide webbing in between the thumb and pointer that allowed his nubs to "hold' the glove while he threw. I hope to video him soon, if it ever stops raining here and we actually get a game in, for a tutorial on catching, throwing and batting. I guess we could go out into the yard and see what we can come up with. I'll keep you posted. Enjoy tball! You'll have more fun watching than the girls playing!

Leeann - posted on 05/02/2009

Im very happy to join this group,I have a 5 year old grand daughter who was born with no left hand also.She also has the little nubs.Nothing stops her she fugures out how to do what she wants.Like climb the monkey bars at school.This year she has desided to plat t-ball and is starting this Saturday .I had some fears about this but Jana has washed them away.Thank You so much for sharing your stories...They have bighten my day:)

Jana Kaye - posted on 04/30/2009

I feel for you and your husband and the months of worry you went through. Since Sam was born 16 years ago, the u.s. we had didn't pick up on anything. I hate not being in the know, but I think it was best we weren't prepared because of my worrying nature. Hunter will be made fun of. He will be asked and you also, by children and adults alike, questions. Some will be out of innocent curiosity and some will be down right rude. I'm convinced God gives these children humor and perseverence to muddle through these uncomfortable interactions. It's our jobs to encourage that quality in them. There will be tears. Even sobs. It's is very hard as a mom, and dad, to experience this. We didn't always handle it the best. If you've read some of my posts above, I've given specific examples on some of these incidents. It has taken 16 years for me to gain confidence in the fact that God has a plan for Sam and all the crap will be used for good in that plan. I'm seeing it now as he is gaining respect for his abilities and how he is handling typical teenage problems that are occuring with he and his friends. I am confident and at peace for his future whether it be in sports or anything else. One of the comforts we've had while Sam was growing up was being rooted in our small community. I'm wondering about you. Being a military family (and please pass on our thanks for your husband's, and your, service to our nation) do you move often? I'd search and check to see if there are any specific support groups within military families on raising a child on the move with limb differences. I'm sure there are resources out there to help guide you in dealing with new situations. I've never given it any thought until now. I'm pretty good at researching myself, so If I find a link or 2 I'll pass it on. Please don't hesitate to ask my son Samuel Kuhnert to be your friend on facebook. He has the biggest heart for these kids. He will be profiled shortly on superhandkids.us as a super hand hero shortly. God bless you and Hunter and his hero daddy!

Erica - posted on 04/29/2009

I spent last summer in Okinawa, Japan with my husband. He is in the Marines and stationed over there. I came home at the beginning of August, two months pregnant, and found out that 5 of my other frineds were as well, all of us due in February. On October 29th I went to my OBGYN for my 24 week check. When they were checking the heartbeat of my son they heard what they thought was a problem. They imediately took me to have an ultrasound to make sure his heart was alright. My OBGYN has been around forever and didn't have the best of equipment so they decided to send me to a High Risk Specialist for them to check his heart. I went on Halloween. It was by far the hardest day of my life. I go in thinking that something might be wrong with my childs heart, and find out that it is not only his heart but his left arm. He ended up having mild arythmia, but that was gone by 36 weeks. As for his arm, I was told that it was probably a lack of blood flow when the lower half of his arm was forming. The second time I went in I was told that is was Mesomilia and that it might be his right arm as well. They sent me to have a 3D ultrasound done as well, seeing as they couldn't tell how many fingures were on his left hand. At the 3D ultrasound Hunter decided he didn't want to participate and hid his left arm between his legs. The high risk specialist kept telling me that they cant tell for sure everything on an ultrasound and that there could alwasy possibly be more wrong with him, but that they were pretty sure that his heart and brian were perfectly normal. Hunter was born on February 22, 2009, he was 6 lbs 15 ounces ans 19 inches long, and yes, his daddy got to come home for his birth! Hunter was the last of the six to be born and the smallest. He was born completely healthy, all limbs normal except his left. From his shoulder to his elbow is the same length as on his right arm. His forearm is very short and only has one bone in it. He also has two fingers and a thumb. My husband and I took Hunter to a specialist who told us that he has Ulna Club Hand. He said it is a very rare case of it seeing as how Hunter has the radius bone and not the ulna. Because he has the radius, he has a thumb. Most with his condition have the ulna and therefore have no thumb. We consider him lucky to be blessed with his thumb.



As of right now, Hunter is the biggest of the six babies and has the largest personality I have ever seen on a 2 months old. One of my friends told me that she was really proud of me when see was looking at family pictures of my husband son and I. She said that she was surprised that we had his left arm showing in the pictures. I see no reason to hid it. Fourtunatly, I have not had many strange faces or rude questions about his arm... but I have had one. It was really hard for me to handle. I wanted to smack the woman so bad. I couldnt believe that someone who had 3 children could be so rude.



When I first found out about his arm I immediately thought about how other kids and people would treat him. I was a mean kid, I know how harmful words can be. I know that Hunter will be able to do anything that he wants to do, I just dont want him to be made fun of. I know how to be strong for him. I was never strong for myself when it came to being made fun of, thats why I was so mean. I dont know how to teach him to use humor instead or to brush it off when I couldn't myself.



It's so scary being a mom, and to me its even more scary being a mom to someone that isn't physical "normal". He's perfect to me and my husband. He's my Little Man!

Jana Kaye - posted on 04/13/2009

Sam hit his very first "Over the Fence" Home Run:) during his first at bat of the first game of the season. You have to understand, our kids with limb differences will set goals for themselves and they will work twice as hard as any two handed two footed kid to meet them. This has been something he has tried to do since he could lift a bat. It was an away game, and of course, I wasn't taking video or pictures! But I will never forget until my dying day the look on my kids face as he rounded the bases, dimples shining. There wasn't a dry eye among all the parents and fans as they have rooted for Sam to reach his goal everytime he's been up to bat since he was 5. He also pitched a no hitter that day. God is good. The way he is using Sam to encourage others is so much fun to watch. Be encouraged! Whether it's an athletic feat or learning to tie shoes these kids WILL DO what they put their hearts into.

Jana Kaye - posted on 03/10/2009

Quoting Karyn:

My daughter was born with no hand also.  How does he bat?  Does he have a prosthetic?  Do you know why he was born that way?  Just a few questions.  My daughter is five years old and is a blessing to me.  She amazes me every day!!!!

Hi Karyn,

Sam bats in a regular batting stance.  He uses his "nub" to balance the bat and grips with his hand.  He is capable of hitting them out of the park and usually has one of the best batting averages on the team.  Google Pete Gray (Grey?) He was the first major league player with one hand.  He had much less than Sam and he used only one hand, no nub, to bat.  Also, I should mention, that because a one-handed batters "reach" is more extended than a 2 handed player, Sam has always used a shorter bat than what someone his size would use.  Coaches always wanted to give him too big of a bat.  His dad actually figured that one out.  Sam and I have been talking about putting some video on here where he demonstrates how he gets things done.  For the most part, these kids always show us how they will do it.  The only thing he ever really had help with was tying his shoes.  He was taught that by another one handed man.  Sam is busy with JV Baseball right now where he starts at 1st base and pitches.  Hopefully we can post video of him fielding the ball as well.  He has a heart to help these kids. 

As far as a cause goes, we don't know.  We have suspected agricultural chemicals as a possibilty because of the numbers of limb-different kids of ag workers in Napa Valley and in a farming region in Russia.  We live on a large family farm.  However, there have been very few limb different births in our area, wich is primarily agricultural.  So, we quit worrying about it.  It is what it is.

Karyn - posted on 03/10/2009

My daughter was born with no hand also.  How does he bat?  Does he have a prosthetic?  Do you know why he was born that way?  Just a few questions.  My daughter is five years old and is a blessing to me.  She amazes me every day!!!!

Jana Kaye - posted on 03/07/2009

He is a DARLING!!! Please feel free to share anything that you find or that Adam does that might be helpful to others. Always encourage him to follow his passions, even when others question your wisdom in that. My Sam had a smile like that, I'm telling you, he was a booger! I mean he was honry, mischevious and full of adventure that got him in trouble many a times. I'm glad God made him that way though. He's growing up to be very respectful and more of a rule follower than a rule breaker, but he still has that spirit of adventure and gives his endeavors his all combined with a sense of humor.

Melinda - posted on 03/06/2009

I am so happy to have found this group. My 3 yr old Adam was born without his right hand.

Jana Kaye - posted on 03/03/2009

Here is the beautiful Poem Elizabeth encouraged me to read. Too perfect not to share!



WELCOME TO HOLLAND

by

Emily Perl Kingsley.



c1987 by Emily Perl Kingsley. All rights reserved



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......



When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.



After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."



"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."



But there's been a change in the flight plan. They've landed in Holland and there you must stay.



The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.



So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.



It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.



But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."



And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.



But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Jana Kaye - posted on 03/03/2009

Hi Elizabeth. I haven't heard of the book. I will look it up. I'm an avid collector of inspirational things. Like you we were also warned of other potential problems. Thank the Lord, nothing showed up. We also chalk it up to "just one of those things.

Beth - posted on 03/02/2009

We've never been given a specific cause for her hand.  All the doctors agreed that it was not from banding, but that's it.  Mostly what we've been told is just that it was nothing we did and that it was "just one of those things" that happens.  There's been some talk here and there about a weak or non-existent blood flow to that hand in utero which caused the deformity, but nothing about what would have caused the problem with the blood flow.

The idea of ag chemicals has never really been brought up.  I guess it could be a possibility, considering we live in rural western Nebraska.  My husband has been raised in this area most of his life and I've lived here about 12 yrs.  It's hard to say whether we'll ever get a definite answer...if there is one.  We are just so thankful for our happy, healthy little girl!  When she was born we were bombarded with the possibility of all sorts of other problems that she might have, and thankfully everything has checked out perfect.  She is 100 percent healthy, she just has one hand...considering all the "what if's," we are so lucky and thankful!

Have you ever read the book "For The Love of Jody" by Tamara Reyes-Muralles?  A family member came across it shortly after Maycee was born and bought me a copy.  It was wonderful!  After being thrown into the whirlwind of unexpectedly having a child with a limb difference and not knowing anything about the support that is out there, this book was great!  In the book is a poem called "Welcome To Holland" by Emily Perl Kingsley that brings me to tears everytime I read it.  You can surely google the poem, at least, and read a copy. 

Jana Kaye - posted on 03/02/2009

Her little hand sounds identical to Sam's. We, like you, were unaware he was going to be born that way.



I thought of what my co-worker said to me when he found out Sam would not be getting a prosthesis- He has the super-duper bionic model- "Good! I've come to rely on mine way too much. Especially when it comes to my self image."



We're not sure what caused his little hand. Are you? The doctors said there was not evidence of "banding". I stumbled on to a National Geographic article years ago that showed a picture of russian children from the same farming region with the exact same limb difference. Upon doing further research, there was also a cluster of children born to migrant workers in the Napa Valley Region of CA. We live on a large family farm. While my husband and his family have always been very cautious with the chemicals they use, we have wondered if there is a connection. Were you or your husband exposed to ag chemicals?

Beth - posted on 03/02/2009

Quoting Jana Kaye:

Maycee couldn't look any happier! Cutie! You have to go with your heart regarding prosthesis. I don't know how Maycee's little hand looks, but, Sam's nub is as calloused on the bottom as the heel of his foot. I don't know how he does it, but this year he drew a crowd in the weight room doing real chin-ups! We did duct tape a plastic cup on his handlebars when he was little. That lasted until the first crash.

Hi Jana!  I have been curious about Maycee's little hand and the areas that are already starting to get callouses.  We had figured that it would continue to "toughen up" the skin as she gets older.  She uses it so much that I think a prosthesis would get in her way.  Her arm is the same length as the other side until the elbow, then her forearm is a few inches shorter than her left.  She does have a wrist, which she can bend around, though.  Her "hand" is tiny, basically looking like a small fist at the end with faint little finger nubs. 

I would kinda be surprised if, at her next specialist appt., they start talking about a prosthesis.  She has always just managed just fine.  Rolling over, crawling, walking, everything has progressed just as any other child.  She's already figured out how to put her own socks on!  She doesn't know any different, so she just figures everything out!

I had to laugh at your comment about older men loving your son!  I work at an assisted living facility for the elderly, and to say that Maycee has captured the heart of everyone there is a huge understatement!!  They all went through my pregnancy with me and then the surprise of her limb difference when she was born and now she's got about 13 doting grandma's!!  I sometimes wonder, too, if it's her personality that is so captivating or her use of her "little hand."  Maybe a little bit of both!!

Jana Kaye - posted on 02/27/2009

Quoting Cami:

Jana, thank you so much for your message, it means so much I appreciate all the information I can get! We have decided against a prosthesis as well, if Beckham wants one when he gets older that is fine with us. We took him to a upper limb spaecialist here in Salt Lake City at Primary Childrens Hospital who explained to us children born like this don't usually end up wanting any kind of prosthesis. Thank you for your co workers name I have not messaged him yet, but I plan to. I hope you don't mind but I was wondering if I caould ask you a few questions... did your son crawl? and how old was he if he did? Did you join any kind of support group (not so much for us but to find other kids like him to be friends with)? I would love any more information you have, any tips, and or any books or other ways of finding information to raise our son the best way possible for him and to instill in him a good healthy self esteem. we can only do so much to "protect" him, we hope to help him to be confident in himself so when the time comes for him to do things and go places on his own he can do so with his head held high.

Hey Cami:)  I gave you my son's FB, not my coworkers.  I don't think he's on here.  Regarding crawling, the doctors told us he most likely wouldn't crawl.  Wrong! He crawled full speed ahead around 6-7 mos.  He walked early too. 8-9 mos.  I think he had good balance because he was so chubby and solid. 

My support group consisted of my coworker's mom.  My coworker was not teaching yet when Sam was born.  He was still in college.  But, he went through our school system and he was a talented athlete and very well liked by his peers and teachers.  He is a twin.  His brother has two hands.  I phoned his mom the day I got home from the hospital.  I had never talked to her before.  I just asked her what to expect and how can I raise my child to be as confident as hers.  She didn't wrap her advice in pretty paper and put a bow on it.  She told me to be prepared for the few periods of insecurity.  She said how we reacted would directly  reflect on how he will react.  We chose strength, humor, compassion and faith, most of the time.  I did have my moments.  Her very best advice though was not to focus on it and to treat him just like his brother.  Sure, his dad and I discuss it from time to time when he's not around.  We always have our guard up, whether we want to admit it or not.  People say "wow, your kid is really amazing. How does he do that?"  We say "He doesn't know any different."  The truth is though, he does inspire and so will your little guy.  By the same token, occasionally, we find a openly jealous (hard to believe) competitor of his who can't believe this kid with one hand just caught a touchdown pass on him or made a double play.  In those cases, we've observed his teamates being his best allies.

Sam's life is sports.  We are not intentional "sport" parents.  But we have used his love and desire in that arena to promote his positive self-esteem.  We started collecting Jim Abbott Baseball cards for him as a toddler.  He was the one handed pitcher who won the World Series with the Yankees.  A coach from another town who we played against, gave Sam the movie called the Pete Gray Story.  Google him.  Sam watched it over and over when he was about 10. 

I can't think of any time where we had our son in a social situation with someone else who has a limb difference.  We are from a rural area and there just aren't that many occurances.  I'm not sure if intentionally creating that for a child would put too much focus on it or not.

I'd like for you to observe and let me know through the years the reaction of old men to your boy.  Old men, the grumpier the better, love my kid.  Always have.  They go out of there way to aknowledge him.  It's become a joke in our family that the grumpier they are, the more Sam can make them smile.  I think it's because of his difference and not necessarily his charming personality,  but I'll have to collect some data on that.

Jana Kaye - posted on 02/27/2009

Quoting Cami:

Jana, thank you so much for your message, it means so much I appreciate all the information I can get! We have decided against a prosthesis as well, if Beckham wants one when he gets older that is fine with us. We took him to a upper limb spaecialist here in Salt Lake City at Primary Childrens Hospital who explained to us children born like this don't usually end up wanting any kind of prosthesis. Thank you for your co workers name I have not messaged him yet, but I plan to. I hope you don't mind but I was wondering if I caould ask you a few questions... did your son crawl? and how old was he if he did? Did you join any kind of support group (not so much for us but to find other kids like him to be friends with)? I would love any more information you have, any tips, and or any books or other ways of finding information to raise our son the best way possible for him and to instill in him a good healthy self esteem. we can only do so much to "protect" him, we hope to help him to be confident in himself so when the time comes for him to do things and go places on his own he can do so with his head held high.

Hey Cami:)  I gave you my son's FB, not my coworkers.  I don't think he's on here.  Regarding crawling, the doctors told us he most likely wouldn't crawl.  Wrong! He crawled full speed ahead around 6-7 mos.  He walked early too. 8-9 mos.  I think he had good balance because he was so chubby and solid. 

My support group consisted of my coworker's mom.  My coworker was not teaching yet when Sam was born.  He was still in college.  But, he went through our school system and he was a talented athlete and very well liked by his peers and teachers.  He is a twin.  His brother has two hands.  I phoned his mom the day I got home from the hospital.  I had never talked to her before.  I just asked her what to expect and how can I raise my child to be as confident as hers.  She didn't wrap her advice in pretty paper and put a bow on it.  She told me to be prepared for the few periods of insecurity.  She said how we reacted would directly  reflect on how he will react.  We chose strength, humor, compassion and faith, most of the time.  I did have my moments.  Her very best advice though was not to focus on it and to treat him just like his brother.  Sure, his dad and I discuss it from time to time when he's not around.  We always have our guard up, whether we want to admit it or not.  People say "wow, your kid is really amazing. How does he do that?"  We say "He doesn't know any different."  The truth is though, he does inspire and so will your little guy.  By the same token, occasionally, we find a openly jealous (hard to believe) competitor of his who can't believe this kid with one hand just caught a touchdown pass on him or made a double play.  In those cases, we've observed his teamates being his best allies.

Sam's life is sports.  We are not intentional "sport" parents.  But we have used his love and desire in that arena to promote his positive self-esteem.  We started collecting Jim Abbott Baseball cards for him as a toddler.  He was the one handed pitcher who won the World Series with the Yankees.  A coach from another town who we played against, gave Sam the movie called the Pete Gray Story.  Google him.  Sam watched it over and over when he was about 10. 

I can't think of any time where we had our son in a social situation with someone else who has a limb difference.  We are from a rural area and there just aren't that many occurances.  I'm not sure if intentionally creating that for a child would put too much focus on it or not.

I'd like for you to observe and let me know through the years the reaction of old men to your boy.  Old men, the grumpier the better, love my kid.  Always have.  They go out of there way to aknowledge him.  It's become a joke in our family that the grumpier they are, the more Sam can make them smile.  I think it's because of his difference and not necessarily his charming personality,  but I'll have to collect some data on that.

Cami - posted on 02/27/2009

Jana, thank you so much for your message, it means so much I appreciate all the information I can get! We have decided against a prosthesis as well, if Beckham wants one when he gets older that is fine with us. We took him to a upper limb spaecialist here in Salt Lake City at Primary Childrens Hospital who explained to us children born like this don't usually end up wanting any kind of prosthesis. Thank you for your co workers name I have not messaged him yet, but I plan to. I hope you don't mind but I was wondering if I caould ask you a few questions... did your son crawl? and how old was he if he did? Did you join any kind of support group (not so much for us but to find other kids like him to be friends with)? I would love any more information you have, any tips, and or any books or other ways of finding information to raise our son the best way possible for him and to instill in him a good healthy self esteem. we can only do so much to "protect" him, we hope to help him to be confident in himself so when the time comes for him to do things and go places on his own he can do so with his head held high.

Jana Kaye - posted on 02/27/2009

Maycee couldn't look any happier! Cutie! You have to go with your heart regarding prosthesis. I don't know how Maycee's little hand looks, but, Sam's nub is as calloused on the bottom as the heel of his foot. I don't know how he does it, but this year he drew a crowd in the weight room doing real chin-ups! We did duct tape a plastic cup on his handlebars when he was little. That lasted until the first crash.

Jana Kaye - posted on 02/27/2009

Quoting Karyn:

Thank you for you words of wisdom.  My daughter just turned 5yrs this month.  She was born without her right hand and forearm.  She has showed us a lot.  Just a few questions.  Why was kindergarten and Jr High the most challenging for him?  My daughter will be starting kindergarten in the fall.  I know every new experience is harder than for most.  I was just wondering.  Did you know why he was born without a hand?

Karyn,

Your girls are gorgeous.  Your question is not fun to answer.  I'm not going to sugar coat, because in many cases I wish we were better equipped as parents on how to handle some of the difficulties.  Although, in hindsight, by the grace of God, everything has  worked out fine. 

First, let me start by saying that I am not sure how similar these experiences that I'm going to share with you are with boys versus girls.  What I mean by most "challenging", regarding kindergarten was 2 fold.  Sam came from a pre-k daycare environment where he had been daily from the time he was 1 year old.  He had not experienced, to my knowledge, a "rude" inquiry (most of the inquiries about his difference were  not rude in nature) about why he had only one hand.  The other pre-k kids grew-up with him there and seemed to not give any thought that Sam was different than they.  Once in kindergarten however, most of those kids were split among 5 classrooms.  Kids are kids.  And, many kids are not taught manners.  From the very first day, Sam was made fun of by one or two kids.  His teacher was awesome and dealt with it in a professional, compassionate manner.  I bought a curriculum that was age appropriate, which included beautiful picture books about children with differences.  She read those to the class and the other kindergarden teachers did that as well.  That teasing didn't last long.  However, on the playground and playing at the sitter's afterschool with neighbor kids, he still had a few more incidents.  Sam's canned answer from the time he was 3 when asked why he was missing a hand, was "shark attack".  He eventually learned (after a few fights) that the humor he used then, works till this day.  He has a 101 "nub" jokes. The other challenging aspect of kindergarten and on into, well, let's say it has been a process in the making, was how his physical nature and personaliy collided with classroom expectations of him.   Sam moved at one speed.  FAST.  He had to be the first one done, first in line, etc.  When you think about physically all that is done in a kindergardeners day, and the rigid clock schedule that most classrooms are on, you can begin to visualize the difficulty.  Getting supplies out, keeping them neat (omg, Elmer's!) and putting them away in a timely fashion is hard for some 2 handed kids.  Try cutting out a circle using your fist to hold and guide the paper.  I actually asked his first grade teacher to do this!  The criticism, although, I'm sure the teacher's never meant to take a notch off of his self-esteem, took it's toll.  He became the class clown and acted out at times to compensate for the attention he felt he was getting because he was different.  As parents, we felt for our child.  We advocated for him at times and disciplined him at times.  It was often a hard call on which to do, or both.

In the 7th grade was when puberty began to set in he seemed to become more verbal about his difference than ever.  We noticed him hiding his nub.  The issues of  wanting to impress the girls and dealing with some bullying that hadn't occured since kindergarden came up.  As a family, we rarely brought it (limb difference) up.  It was not an "issue" with us.  Some parents choose to talk about a child's difference or medical condition openly in front of the kid often.  We did not.  We could not change it.  We wanted him to grow up and be as competitive as anybody else, so we consiously chose not to address it unless it was a necessity.  We had to address it when he beat the snot out of 2 boys who were, unbeknownst to us, teasing him constantly in the lunchroom.  We had to address it when he was told by some boys cut from the basketball team that he didn't deserve to be on it.  To help Sam over what seemed to be some inner turmoil at this stage, my sister's (who are much younger than I) took him to get a new haircut and dressed him head to toe with a few "chick magnet" outfits.  He would've never taken my style suggestions.  We were blessed to find a pitching/batting coach that instilled confidence in that child every time he was with him.  Also, Jesus became sames biggest source of strenght at this age and now.  He joined FCA at school and it became a place of comfort for him. 

After all of that, regarding your darling daughter and kindergarden:  If and when you experience times of frustration with the educational system, please look into getting a 504 plan for your daughter.  It has "teeth" in it and gives you a large "say" in how to best make accomodations for her if she needs them. We needed it to bring an OT into the school day to help him learn how to do some of those basic things I've mentioned previously.  Also, we bought a One Handed Typing program from Onehandedtyping.com and donated it to the school.   We had to add to the 504 in the 5th grade, just so Sam could use a different style lock than a combination on on his locker! 

I know I'm "wordy".  I hope I've helped a little.  It's not going to be pain free.  I wish it were.  I really believe God uses these kids in a way to humble and inspire others and he is with them (and you) during their difficult seasons.

Keep in touch! 

Karyn - posted on 02/26/2009

Thank you for you words of wisdom.  My daughter just turned 5yrs this month.  She was born without her right hand and forearm.  She has showed us a lot.  Just a few questions.  Why was kindergarten and Jr High the most challenging for him?  My daughter will be starting kindergarten in the fall.  I know every new experience is harder than for most.  I was just wondering.  Did you know why he was born without a hand?

Beth - posted on 02/26/2009

Hi Jana!  Thank you so much for sharing about your son!  My daughter, Maycee, will be 2 in May and we are already amazed!  I think back to when she was a newborn and all of this was still really new and overwhelming and I would have thought that her "little hand" would be more of an issue right now than it is.  She can do everything, just in her own way!  I'll admit that I teared up reading you describe your son's experiences in school, because I think that is my biggest fear right now.  I know she's only 2, but I wish I could just keep her home forever and keep her from those challenges she'll face.  I can't help but cry even at the thought of preschool.  And it doesn't help that she's my baby and the little girl I wanted SOOO bad!  But, then again, as spunky as she is at 2, my guess is that she'll be able to hold her own just fine!

In April we take her back to her specialist in Denver and I'm interested to see if there's any mention of starting her with a prosthesis.  Honestly, I don't think she needs one.  But they did say last time that they could make a special attachment for her tricycle, so that will be neat to see what they have come up with!

Jana Kaye - posted on 02/25/2009

Cami, I still tear up thinking back to those days of worry and anxiety. In his first year of life we took him to 5 different hand/ortho specialist trying to figure out how to put him on a level playing field. Kleinert Hand Clinic in Louisville, KY was where we felt like we got the best advice. Dr. Sheckert told us to let him be. He recommended against prosthesis until Sam turned 5. He said it would stunt the growth of his arm and make him dependent on it. At 2 we enrolled him in occupational therapy/play to encourage him to use his "nub". They had him turning off and on light switches, batting balloons, rolling balls, etc. In order to keep as much symmetry as possible in his shoulders it was important that he used it in an overhead motion. At 5 we took Sam back to the clinic. Sam boldy with stubborn determination said "NO". I don't need it. Dr. Sheckert wisely advised us to take Sam's word for it. We again had OT in the first grade for "anal" teacher peeves like: cutting paper, putting caps on and off markers, putting paper in folders, etc. He was blessed that I taught HS with a man who had exactly the same limb difference when it came to tying shoes. My coworker taught him in about a weeks time in the 3rd grade. Now he ties faster than my other two boys! Look up Sam Kuhnert on FB. Message him that I told you to request. It does help to have a positive person who has been there-done that. Sam wants to coach college someday. He has a dream of having athletic camps for kids with limb differences. He designed his own "nubz" glove for football. He had a seamstress make it for him. He'd also like to market products that he designs to level the field. Don't get me wrong, we've had plenty of uncomfortable and downright sad times. Sam has to work twice as hard as anybody else to get the same amount of credit. Kindergarten and Jr. High were the worst years for his self-esteem. You have to be strong for him. Trust me, you'll want to say "forget it we're home schooling". But I knew that he was being prepared for life, so we encouraged him and told him that most of the kids that made fun of him were not as fortunate as he in many ways. He did fight and act out a few times, but grew to have compassion and look for the reason why kids could be mean. That helped him to be resilient. Resilient- That is the best word to describe these incredible kids! I'll look forward to hearing how your little boy grows and amazes you. Take care, JK

Cami - posted on 02/24/2009

wow I am so excited to see this group I had my first child in november. He was born without his left hand and forearm this was a huge shock, we had no idea. I honestly feel so blessed to have such a special little man. The hardest part was was worrying about what he would be able to do on his own so it is so awesome to hear stories of kids doing so well, I think he will be just fine and an inspiration to people, when I think of things i don't how to teach him like how to clip his fingernails on his right hand, tie his shoes etc I just remember HE will show ME how it is done!

Jana Kaye - posted on 02/04/2009

How old is your son? The doctors at Shriners wanted to amputate his "nubz" and fit him w/prosthesis. We took him to Kleinert Hand Clinic in Louisville, and they advised us to do nothing until he was 5. We educated Sam about prosthesis and he was adamantly opposed to having his nubz removed and by that time we knew he was doing fine without one. The doctors there told us he'd "show us". And, has he ever! From tying his shoes, to bow-hunting, he truly personifies "where there's a will, there's a way".