No surgery - reply for Carole

[CW1992]

This is in response to Carole's questions about what to look out for or anticipate in the future for her daughter. I am posting it here in case it could help others having the same questions or worries. Carole, please try not to worry so much about the "what if's". Those are so much scarier than what life has actually been like so far. Looking at Brittney now and all of the worries I had for her as a baby - - I realize that she showed ME that she could do whatever she wanted to do. She learned to ride a bike, wash her hair and comb it, put on a belt, put on a jacket or coat - she told me once "Mom, it's easy - I just put my left arm in FIRST and then it's a piece of cake". Velcro was great! Carole, I know your daughter will find ways of doing everything she wants to and probably amaze you at how smart she is. I will give you alittle background on Brittney now. She is 9 years old, left OBPI, can not raise her arm up all of the way, completely supinate unless she arches her back, or completely straighten her arm. She has gotten so good at compensating though that it is hard to tell she is doing it sometimes. Her movements are so smooth and natural. She has not lost any movement or had any pain. So far with Brittney, I let her try and do whatever I would have if she wasn't injured. I also never drew any attention to her injury. I'm glad that I didn't. I didn't want anyone ever treating her differently. I wanted her to learn her strengths and weaknesses on her own just like every other child does. I did tell her teachers though in case she needed help doing something but I talked to Brittney very early about what to say if anyone ever asked her about her arm and it has worked great for all of these years - now at 9 she explains with more detail though but when she was little she'd say that her left arm just isn't as strong as her right arm and so sometimes her right arm has to help. She has always known she had a problem with her left arm even as a little baby. In playgroups she used to insist that all of the kids let their arms take turns playing with the toys and they all would! The kids didn't think anything of it then and still don't - no big deal! She was in dance when she was 3 but decided by 5 that she wanted to play t-ball instead. She did OK and had fun. She took gymnastics for a while but she can't bend backwards to do a backwards summersault - so she just did a front one instead. She was great at hanging on the rings. She had a hard time balancing on the beam and walking backwards - real hard time actually! For everything that she had a little trouble with she seemed to be great at something else though so it evened out. She tried cheerleading in Kindergarten with the rest of her friends but didn't really like it - had a hard time clapping but I let her try and decide for herself. She stuck it out though - - she definitely had the loudest voice! As a toddler she always carried her arm slinglike and now it seems to hang straighter but she slings it when she runs. When she was a year and a half old I remember that she could not pick up a big beach ball that her play group was chasing around. She couldn't get her arm out sideways and then have the strength to hold it - - but by around 2-1/2 she could do it. Between age 3 and 4, I noticed that she arched her back so much - especially to lift things or use her left arm - but even just standing. She stuck her stomach way outward. Her shoulder blade stuck way out in back on the injured side. At age 4 she started using e-stim for 1/2 an hour a day. It seemed to help loosen her up and we were told to have her use her arm as much as possible while it was on to build up her muscle strength. Once she started school she was always so active anyway that we sort of forgot about it. She didn't like to use it and the benefits didn't seem too great for her. It's still in it's little "green frog" fanny pack in a drawer. Over the years she has gotten very strong in her injured arm. Her arms have always looked the same in muscle tone but her injured arm is now about 2" or so shorter. They look just the same except for length and the way she carries her injured arm. They first noticed the length difference when she was around 4 years old. She was checked at age 4 for scoliosis. She had an MRI and was given chloral hydrate to sedate her "Mommy why are there two of you??"..... They checked everything for tumors or other problems too I believe (t-spine and L spine). The tests came back that she did have a slight scoliosis which was thought to probably be due to weak trunk muscles due to her birth injury. Two different specialist confirmed her MRI and both agreed. We were told that she needed to be x-rayed 4 months later to see if her degree of scoliosis was getting worse. In the meantime our therapist recommended doing tons of stomach muscle exercises - sit ups, windshield wipers, crunches, and did wheel barrel for arm strength. We all did them and somehow made it fun (??) Four months later after x-rays her scoliosis degree had gone from a 13 deg curve to a 6 deg curve. At five Brittney started wearing a nighttime cast to help straighten her arm. Her doll had one too. Her doll kept his on at night - Brittney threw hers on the floor! We finally quit trying. Brittney has continued to have her scoliosis checked. Her degree bounces up and down but so far so good. It's been as high as 20 deg in the fall and back down to 11 deg in spring/summer which I feel is due to her swimming and how it helps her in the spring and summer and she is not as active (besides soccer) in the fall. She no longer has a therapist. She is so active just with her everyday life that her arm seems to get plenty of action. We also just got a family membership for access to a pool year round and are looking in to putting a pool in the yard in the spring since it has helped her so much. Now to the surgery question - - when Britt was eight we saw a neurologist who said she was doing just fine. We had found out that there was an actual brachial plexus clinic nearby and we were curious and wanted to get the opinion of a BPI specialist/surgeon to see if anything else could be done to help Brittney. Our neurologist finally gave us a referral. At that appointment, the surgeon told us that Brittney's shoulder is dislocated. Surgeries were suggested - one to fix the dislocation, one that could possibly help her to raise her arm a little higher and to supinate a little farther, and one to make her arm hang more normally. Other surgeries were also discussed if we'd be interested. She is in no pain and does not want to have any surgeries and is completely happy the way she is. If she should start to experience pain or decide that she would like to raise her arm higher, etc.. we will surely look further in to the surgeries at that time. Brittney is now classified as having a moderate stretch injury of C5 and C6. She has always had great finger movement and grasp. Her arm movement and strength slowly came during her first few years. I think her overall abilities peaked at about age three although her strength continued which allowed her to continue to do more and more. I feel that as she got older things have gotten easier. The things that she has trouble doing do not seem to bother her. She has learned from early on that some things she is great at and others she isn't - just like everybody else. She figures out ways to do anything she wants to do. In PE a few weeks ago she did 43 situps in two minutes during the time test! Some kids couldn't do any. Funny how therapy has seemed to benefit her in so many other ways. It has made our family stronger because we often made therapy time - family time. My youngest daughter always did her exercises every night too with her sister because she thought it looked like fun. The girls racing down the halls in the "wheel barrel races" - one of my favorite memories. Brittney has many friends. Sleepovers, birthday parties, and kids coming over here to play all of the time. In our experience kids have never been cruel - just curious, and she has been in two different schools in different states so far. I think she'll be able to handle the teenage years just fine because of her confidence and she makes friends easily. I'm telling you these things because I wish someone would have told me these things when Brittney was a baby. I wish I would have known that she would be OK and that her arm is just one small part of who she is. I feel that teaching Brittney how to be a good friend, a good sport, do well in school, be honest, etc...is more important than how high she can raise her arm. I'm glad that I didn't make a big issue out of her arm to everyone when she was little and that I let her learn to speak for herself and try things herself and make her own choices about what she wanted to try. I also wanted to say that it hasn't been easy either. My heart still breaks when I watch her sometimes. It was hard watching her try to be a cheerleader like her friends, and I cried often those years she took dance - but she never knew that. School programs with arm gestures break my heart but not hers. I have a hard time during swimmeets watching her getting beat by her peers (except backstroke!!!! she's good!) She can't get her arm all of the way out of the water in some of the strokes and that slows her down alot. She now is trying to decide what instrument she wants to play. She's in fourth grade so we have a year or so yet but she's wanting to play the drums. I know that she will once again prove to me that she can do anything she wants to do - she'll figure out a way to do it and make it work for her. Things will always be hard because I love her so much. I know that this is long but I hope that something I've said will help you somehow.
Christy

[Carole]

Wow- what great info! Thanks you so much! I agree totally with all your choices! I appreciate all the time you put into your thoughtful post. Like you I cry but my child is so capable and can do most everything. We will also wait on surgeries if suggested until she loses something or wants it. Right now its just wait and see - the specialists think she is doing well.

[Steph333]

Christy - I cannot tell you how much your message helped me today - how badly I needed to hear you say these things. My son, now 4, sounds real close to the injury your daughter has. He is now telling me he "hates" his arm and it is killing me inside. I am trying so hard not to let him see that though. He uses it well in compensating but I feel like there is so much more I should be doing for him. Checking into surgery, etc. Like you, I have not made a big deal out of his injury, just letting him clear the obstacles as they come. So true that the person they are is so much more important than the injury they have. Very inspirational - thanks so much for posting!!

Stephanie - Wilm, DE

[Melissa]

Christy, I also just read your message. My son is almost 21/2 and we are going through a difficult time deciding whether to do surgery. He is functioning fine if not better than some other 2 year olds. What you have described sounds almost exactly like my son. It is so hard to visualize how he will be in the future.
Thanks for the details of your daughter. Melissa

[francine]

What an inspirational story! Thank you so much for sharing it with us - the ups and downs. I'm going to try and remember your words of encouragement. Brittany is a very special girl and you are a very special mom, too.
-francine

[Pam Anon]

Christy:
I would hate to see your story lost in the pages of these message boards. You write so well--and so poignantly -right to the heart of the issues regarding this injury and your daughter.
Have you asked if Bridget might publish this in OUTREACH?
What about Reader's Digest?
Keep writing--you've got a message for others that is so healing. Very best, Pam Anon

[CW1992]

Thank you all for such nice replies. After I hit the "post" I got alittle worried. Thought you might "Boo" me because it ended up being so long. I was almost scared to look at the replies. I am so glad that you thought the info was helpful. I was hoping it would be. Your replies really made my day!
Thanks again, Christy

[TNT1999]

I'll echo the others' comments and thank you, Christy, for posting your years of experiences and heartfelt expressions. It is nice to read such positive words. I have already learned not to dwell on worrying about what the future will bring b/c it can make you crazy and the Bible tells us that each day has its own anxiety sufficient for that day. As I read your post, I thought, wow, someday, I'll be writing about Nicole's 9 years of experiences, but for now I'm treasuring our toddler time together. Anyway, I just wanted to say thank you to you and to Brittney for sharing your experiences. Take care. -Tina

[marymom]

wow, that was a great story
reminds me soo much about how I think and feel about my son also-
attitude is a very large determining factor of how well adjusted and happy our kids are going to be!
happiness can sometimes be a discipline...
its so great to hear about a happy well adjusted kid!
I will book mark this post for others to read regarding surgery also
and I think Pam is right...why dont you see if Bridget is interested in publishing your story?