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Dakota's Story

Before June 29th 1995 if you would have asked me what Brachial Plexus Palsy was I would have been stumped. That was the day my daughter, Dakota was born. She weighed 9lbs 6oz at birth and because of her large size the nerves in her shoulder were injured during her birth. I had never heard of this happening before and had no idea where to turn for information.

I looked in all the baby books, and all the books about children's illnesses but I found nothing. I spent a whole afternoon searching the library for more information but I could find none. The nurses at the hospital told me it was nothing, they had seen it before and it usually goes away in a few days. Dakota's right arm just hung from the side of her body, she had no movement in it at all. After doing X-rays and determining it was not any broken bones they referred her to the Vancouver Children's Hospital.

After meeting the Doctors there we came back with all kinds of information on surgeries and physiotherapies. We were very overwhelmed. We thought we were the only people going through this. But it actually affects about 3/1000 babies born.

Dakota has not had surgery, her nerves had regrown enough that she has about 70% movement in her arm and she can function quite normally. She still has to do her physiotherapy at least a couple times a day so that the muscles she can't move very well on there own don't tighten up, but we do those at home and only check in with the physiotherapist every few months.

Dakota has a very good attitude about her injury. We have always told her that her right arm is her good arm. She knows her "good arm" doesn't always do what it is supposed to but she makes such an effort and other than the odd time where I have seen her get frustrated and yell at her arm for not listening, she takes it well.

She went to swimming lessons and can dogpaddle on her own and do all the other things kids her age do. She also played t-ball in the summer and loved it. She had a bit of trouble holding the glove the proper way at first but she soon adapted. She never stops amazing us. She got really mad the first day because she couldn't do it the way the other kids did and I was upset thinking she was sad because of her arm, but her big thing was that she was left-handed and we soon found another left-handed kid on her team so they were the "lucky ones" who got to bat from the opposite side.

She also went to a gym class where she played on climbing equipment and played games. She had a wonderful teacher who has always encouraged her and given us wonderful ideas to make her use her arm to it's fullest extent. But being "almost 4" Dakota has decided she doesn't want to go to gym anymore "It's a baby class". So she will be starting new classes soon. Her newest interest is soccer and she is going to start playing this week. She is also starting dance lessons...if only I had half her energy. She still swims on a regular basis and we still do her physiotherapy everyday at home. She also plays golf (our poor lawn!!), basketball, and has recently tried bowling for the first time.

Three years ago when I got the internet, I started searching out information on Brachial Plexus Injury and found some information and have met some wonderful people who have children who also suffered this injury to different degrees. I really felt like I was alone until then, I hadn't heard of anyone else who's child had been affected before. I have started this site, with links to other sites in hopes that people won't feel alone and like they are the only one. I won't go into technical information, I have put many links to some great places to find out more information about Brachial Plexus injury. If you have a site that I haven't included please let me know and I will add it. I hope to hear others stories of Brachial Plexus and will try my best to get back to everyone as soon as possible. I hope you find this site helpful.

Well...we had our first run in with Dakota coming up against something she couldn't do and it almost broke my heart!!

Dakota is taking a dance class now and when I signed her up I thought it was a fun dancing class where they just played to music, but as it turns out it is ballet and Dakota can't keep her posture straight and keep her fingertips on her shoulder at the same time. The teacher told her to stand up straighter and Dakota said she had to go to the bathroom so I went with her. When she was in the bathroom she asked me why she was different than all the other heart broke.
I told Dakota that not all kids are the same and some can't sing as good as she can and some can't run as fast as she can and some can't swim as good as her and just because she couldn't stand up as straight as everyone else when she had her arm on her shoulder didn't make her different. I also told her that the world would be pretty boring if we were all the same and then I told her she could do anything she put her mind to, but there are days when I wonder if she can....

Oh well, on to the positive, she is also taking soccer now (every three months she gets to pick 2 classes in the recreation program)and she is doing awesome, she can dribble, pass the ball and the other day she scored her first goal...another moment that pulled at my heart, but in a good way! :)

All in all everything is good, but I am finding this time of year Dakota's arm is stiffer than in the spring/summer when she is outside playing and climbing more and also swimming alot more. She has been finghting colds so much this winter we haven't got much swimming in. Does anyone else find this? I try to exercise it alot but sometimes it is hard...3 1/2 years olds can have attitudes!:)

We go to the Brachial Plexus Clinic at Children's Hospital for another evaluation March 11th, so hopefully they will have some good ideas for us.

Spring 1999

A couple of days ago we took Dakota to Children's Hospital for another evaluation and they noticed her arm was a bit on the stiff side. I still haven't figured out how to keep that from happening with out her swimming and doing all of her out door activities. We stretch it all the time but it just doesn't seem to get the same sort of work out as it does at the park or in the pool....thank goodness it is only a month or so away from being able to go back outside more and hopefully we will all be over with our colds and ear infections etc so we can go back swimming again. At our appointment this time they talked about the possibility of tendon transfer surgery. They are going to bring another Doctor in at our next appointment so we can discuss it. I am so unsure of this...on one hand anything to make Dakota "normal"...on the other hand she does get along well and can do anything she puts her mind to and what if she loses some of that movement. I guess we have alot of thinking to do over the next couple of months. Have any of you gone through with the tendon transfer? What was it like? I would love to hear some other peoples stories about this. Other than that, things are pretty calm around here. Dakota finished her dance class and we videotaped her last class when she did her little dances, it was so beautiful, she was my little angel with a bent wing! She is going to take art classes next, she has decided that she wants to be an artist now....oh my!!! She is unbelievably good given that she is using her left hand and I think she probably would have been right handed...just my unbiased opinion! LOL

September 1999

Well, we are going back to the clinic soon and I think we have decided to not get the surgery. Dakota functions so well and she does so much now, she is in preschool 3 days a week and swimming 2 days a week and over the summer she again lost the stiffness in her arm, I think we are just going to have to make and effort to do more during the winter. I think preschool will help alot with that though.

It is so hard to decide, if she was unable to do things and NEEDED the surgery it would make things alot easier. She is so sweet though and does so well without it. My only problem is what if years from now she says "Why didn't you get it done when I was a kid?" But I suppose if she did get the surgery and it didn't help her that she could say "Why did you make me go through that when I was a kid?"

She is totally into art now, she is forever drawing and glueing. She wanted me to put some of her art work on here so here it is...........

September 1999

Can you believe it two updates in one month?? Anyway, I wanted to tell all of you that we went to a picnic the other day and got to meet a few other families who have children with Erb's / Brachial Plexus was so great. I am just sorry we didn't get to stay all day but unfortunetly Tim had to work.

Dakota was acting so shy, but she took alot in, all the way home in the car she was asking all kinds of questions about the other kids. She was the oldest one there so we more answered questions than anything but it was still great to have others to talk to.

April 2000

Well after a few trips to Children's Hospital and numerous late night chats Tim & I have decided to get surgery for Dakota. We are very nervous and still wonder if we are doing the right thing... but we want to give her every chance we can and we think that this surgery will give her more shoulder movement which should give her more lift in her arm and hopefuly make things easier for her. It will be early Summer before they do the surgery which we are a bit upset about. She starts kindergarten in September and we would have liked her to be out of the cast and on her way to recovery by the time school started. But I guess she will be okay. She always is. She is such a strong little girl she amazes me sometimes. Anyway.. I will update you all when I know more.

June 2000

Well after being all set for Dakota's surgery for June 14th the Doctor phoned 2 days before and told us they are postponing the surgery until the fall. The Doctor has been to a conference on this surgery and has learned of a better way to do the surgery through the armpit instead of having to cut the shoulder open so he is studying up on that before he does the surgery to see if it would work for Dakota. *fingers crossed* It would be nice for her not to have the scar. I will keep you all updated when we know more but as of now it looks like the end of October when she will have her surgery.

May 2001

Wow.. a year since I have updated. And what a year it has been! Dakota's Dad and I split up in the middle of October... so we again postponed her surgery.. we felt she was going through too much to handle the surgery on top of everything else. So now.. she is booked for July 5th. We are excited and nervous all at once. I know it is probably for the best.. but I am still a bit scared. But I guess we all are putting our babies through all the things we go through!
< Dakota is now almost finished Kindergarten and has yet to let her arm slow her down. Over the winter she took skating lessons and (much to wreck Mommy's nerves!) skiing lessons.. she even won a little prize for being the fastest skiier in her class.. "Is this a good thing?" I ask. lol
She has also taken to writing books.. she illustrates (yes that is the word she uses!) them and I have to write down all the words for her.

Take care all of you and please keep me updated on all your progress! Tanya


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