United Brachial Plexus Network, Inc.

My daughter is almost 10 months old (Monday). She had primary surgery at TCH when she was 5 1/2 months old. (Avulsion of C7, partial avulsion of C6, rupture of C5, and stretching of C8) We are still waiting to see signs of improvement from the surgery but it is so hard to look at her arm and not get severly depressed. I am so tired of looking at her for arm movement rather than watching "cute baby" stuff. There are some days that I don't do her exercises or scar massage because I want to give her and myself a break. I pulled out her baby book to write in that she finally sat up on her own Tues. (even though she had a little help from her foot getting caught by her foot stool!) and I start to cry about all the other things that she can't do yet (i.e. crawl, clap her hands together, etc.) Everyone seems to think that I am handling things so well but at times I just break down and cry. My 3 year old is not potty trained yet and I feel bad for putting so much responsibility on her to do things herself because I don't have the time. All the kids in her preschool class are potty trained and she hasn't really even started. She pooped at school the other day, sat in it for 2 hours, and got huge blisters because of it. It caused her significant pain, but she did the same thing again tonight. I can't imagine how hard it will be to potty train my baby when she is going to have difficulty pulling down/pulling up her own pants. Some times I can't see the light at the end of the tunnel, but I know that time goes by so fast that it won't be long that I will look back on these times and wonder what was so bad about them! I'm sorry I was so long winded but I feel like this is the only place that I can go where people really understand. Thanks for listening.

Julie, I'm so sorry you're having a hard time of it. I don't know if it ever gets easier...but, perhaps, we learn to accept it better. Having another child to care for while tending to the bpi baby is especially challenging...the other child needs attention too but usually has to wait. My children were 5 & 7 when my bpi baby was born and the last 3 years is a blur as far as their school days, etc. Everything ended up focusing on the bpi injury, surgery, therapy, trips to TCH, etc. It breaks my heart when I try to recall 1st grade for my daughter or 2nd grade for my son. I don't think I was very happy either. Can you get a grandma or aunt to come over and help with the baby so you can spend more time with the 3 year old? Can you sneak in reading stories or doing puzzles while the baby naps? Can you wait until nighttime to do laundry or clean so you can cuddle a little more with the 3 yr. old?

You are a good mom, don't ever forget that. Your 3 yr. old will potty train; don't worry about her classmates. Do you have someone you can talk to about how you're feeling? If you're married, can your husband help you by listening to you more? Can you find some time to exercise or soak in the tub?

I pray you find peace. Sometimes we have to "accept the things we cannot change" and take a deep breath. Give your babies extra kisses and be kind to yourself too.

Hi Julie and I'm so glad you shared your feelings with us. There are so many ups and downs and you never know when it's going to hit it seems. And just when you think everythings going ok something shifts. I wish it were different. Life does become more stabilized as your child gets older and starts doing more things that other kids do it seems at least. But those down days seem to be still lurking behind the corners. We're here for you - keep on sharing.
big hugs to you,
do something nice for yourself tonight - it might give you a different perspective (at least temporarily)
-francine

I found the easiest way for me to feel better about my situatin is to see how many many things I have to be greatful for(go ahead-slap me- I know thats probably the last thing youwanted to hear)NOT that it isnt a total ditch to be in the predicament of feeling like you cant do things the way you thought you would/should-dont should on yourself- I hate not being able to accomplish things for my kids- but I have so many that by now I totally recognize that being a good mom is NOT doing everything for your kids- I think its perfectly fine for your daughter to pottytrain herself- she might walk away from it with less hangups then someone elses daughter who spent hours daily TRYingto train her daughter...who knows- as for the blisters- that'd REALLY piss me off at the care provider but that may be a different story- also- if poop is blistering her she might have something going on like yeast or acidic poop...but thats also another storyline-
hang in there Julie- you sound like a great mom and Karens advbice is good- do some mom time- because you need that- and ...`10 years from now you cann look back and smile at the great job you did!

I can't tell you when it gets easier because I haven't gotten there yet myself. I have my bad days and my good days. I remember the wait for movement after primary and it is so stressfull for everyone, even his siblings. My son is 10 1/2 months old and he is my long awaited boy (my little bear cub). I have 2 older girls that adore their brother. I am very surprised that they don't resent all the time and attention he gets from me and his father. My son had primary surgery when he was 4 months old. He is now 7 months out of surgery and I see little improvements everyday, so I wanted to share that to give you hope! My son had c6, c7, and c8 avulged and c5 stretched. He had 3 nerve grafts done. We are headed back to TCH on Nov. 19th for more surgery because they believe there is scar tissue compressing the nerves under his arm. They will also test his bicept nerves to make sure there is juice getting there. This give me great hope for much more movement! I am excited even though I dread surgery. Email me if you want so we can talk more since our children are similar in age. I know some days are better than others for me emotionally and I have come to accept that and avoided being around people on purpose. On those days It helps me to get out and do something like walk around a mall or park. Where do you live? I also try not to worry about too many things in the future like what other surgeries, will he ever throw a ball with his affected arm, will he be able to get his pants up and down when potty training, will he be able to keep up with his sisters, etc. I will worry about each thing as necessary and not until. I find it overwhelms me to much. You said your daughter got from a lying position to a sitting position? How wonderful!!! I know she may have cheated a little but hey, it still counts! We appreciate the little things more, I think. My son is still unable to do this yet but we are working on it. He has a Physical Therapist that shows him how to do things like that. We have Early Intervention program through our state that pays for Therapist to come to your home if your child has special needs. I almost forgot to tell you, He is almost walking! He can walk but is afraid to let go yet as he has had some nasty fall because he can not catch himself with his right arm. My older girls both walked at 10 months of age so he is a little slower than them but not by much. I am sorry didn't mean to write a book but your post just hit really close to home for me!!! Take Care and feel free to email me if you would like.

I understand what you are going through. You are doing a great job! Not many people have these things to do with all at once. When my son was little I use to cry alot, and still do. I have a younger son also who is 11 months younger than my BPI child. My son andrew, did have trouble with crawling, walking, etc.
But he has adapted to his "own way of doing things."
It is okay to feel overwhelmed. God, only knows what we go through. As for you daughter, can you put a pull up on her at school? She will learn in her own time to get potty trained, some kids don't get trained until 3 1/2 to 4 years. Don't feel bad. Is your mom there to help. Take your daughter out for the day, shopping or out to eat dinner with 'just mom'. I also tried rocking both my boys at the same time, and read a book with them also. I also took a bath, with good smelling bath beads, a good book, a candle, and music, when the kids are asleep to try to relax. Remember though that you are not alone, you are doing the best you can. Just remember we are out there to offer you support. ALWAYS!!! I wish you peace. God bless. Debbie

This is Debbie again. I just wanted to comment that i think it was GREAT that she sat on her own. WHAT an
ACCOMPLISHMENT!!!!!!! She has been making strides, baby as they may be, they are there. Something to be proud of! Just remember it is ok to take a break once in a while. We are all human. Don't feel bad if you don't do your daughters exercises for a day. Sometimes we just need to rest. The main thing is that you are there for your children. You take care of them, feed them, cloth them, and listen to their needs. It is ok to cry. It does get better, either that or we just learn to 'adapt' ourselves. Sorry this is so long winded, I just want to make sure you know you are not alone, and that you are a good mom.

I don't know that it gets easier. Things change and new difficulties pop up. But for what it is worth it seemed to get easier for Gabrielle and me when she turned a year old. She did not start crawling until she was a year old (when most kids learn to walk). She seemed happier once she was moble. She also used her BPI arm more. She could get to the toys she wanted and would play alone for a much longer time period. Gabrielle uses her BPI arm more if you do not try to force her. We are now working on walking at 18 months old. So, I feel like things are getting better the older she gets. I hope things get better for you soon. We are here anytime you need to talk.

There are days that you feel like a "newbie" all over again. Alone, frightend, helpless and hopeless. But the good days make up for it down the road. Katie is 14 months post primary and still gaining from it. I think it became easier for us (and believe me we still have days of sadness and anger) when we got over the hump of seeing some movement. After that we kind of accepted that all of us are different, we all do and have different strokes and her arm is just that-her arm, no matter what it looks like, no matter what she can do. This is easy for me to say-NOT, I just spent yesterday bawling my day away after getting her IPAS test results from child dev class and seeing that HUGE list of things she cannot do that the other kids her age can.

Do try and take a break, it helps so much. And don't be so hard on yourself. You did nothing to cause this injury, you have done nothing to make it worse, only better and you sometimes just have to be Mommy and not her therapist too. Sending you great big hugs and hoping you feel better soon. Just remember that although this is a LONG and HARD road--you aren't walking it alone and we will all be here for you.

In fact--BIG HUGS TO ALL YOU MOMMIES OUT THERE!!!