United Brachial Plexus Network, Inc.

Normally, I try to be so upbeat, even in the face of all the stuff we have to go through with Danny's BPI. I know you all can relate. But today, I have just hit a low point.

As I write this, my husband is with Danny as he gets another 3D CT scan (post-acromioplasty, to see how he's doing). I'm so sick of hospitals, anesthesia, bla bla. And when I took Danny to his OT yesterday, she said that he is at risk for scoliosis!!! I guess it's because when he plays on the floor, he tends to sit at a right angle to whatever he's playing with and uses his good arm. As a result, he can't sit Indian style without toppling over, because his abs are so weak and his hips are so tight. Has anyone else heard of this?

Now we have to get a PT. That's four sessions a week we're looking at now, with OT and aquatherapy.

At what point do you just collapse with all the stress, worry, anger and anxiety? I know I'll be back to be cheerier self before long, but today I am really a pile of tears.

Thanks for listening.
Janet

Janet,

You know, sometimes you just HAVE to collapse. Sometimes the burden is very hard to carry. I think many of us go through the same emotions you are currently having at different times of our children's lives. There will be good months and there will be really bad months.

There are days that my child's gross motor issues completely outweigh the bpi issues. WE stopped going to OT and now only do PT and they combine everything together. I do the fine motor hand portion myself at home and actually that's quite easy to do. (I'm an avid shopper of those online therapy stores much to my credit card's chagrin).

PT has been wonderful for us. I can see great improvement as time goes by. I hope it works as well for your child. My kid loves it and can't wait for the next appointment. I hope yours is just as fun.

I hope you feel better and have a good weekend. You're in my thoughts.

Hi Janet, so sorry your feeling down today and I want you to know that we all have those days . It's ok let it all go. As I am no Doctor please don't quote this but It is my understanding that all our BPI children are at risk for Scoliosis ? I recall our Surgeon saying this. AS far as tight hips go my youngest and non bpi child suffers from this too......excersies given by the PT really helped out.

Good Luck,

Lenni

Hi Janet.

Just wanted to let you know that I'm thinking about you. I'm sorry you're having such a rough day. I think we all go through these.

We often forget (and I am VERY guilty of this) that this injury doesn't just affect our child... It affects the whole family. And it is so hard!

So, tonight, take a hot bath, listen to your 2-nights live CD, and take a break.

Let me know what I can do to help!

Love,
Cherie

I know exactly how that feels - it seems endless and exhausting - one thing we have done is cut down on the appointments and try to get the physios and ots to teach me what to do at home then get an update once every week or two , now at Richard's age it's more like once a month - it's way less hassle if they train you how to do it , and just do it at home if possible.The added trips just added to the exhaustion in our family and made it a pain for other kids who had to tag along and spend their life waiting for Richard to have therapy done and Richard's life felt like we were alsways running off to therapy - I can do the therapy in 45 min or so at home and the other two just play around and we cut out the travel time and because I don't need to make an appointment we can decide where to fit it into the day. I guess it depends on how complicated the treatment is at this point whether this is advisable. hope you're feeling ontop soon again - the lows can get pretty low with this.hugs vanda

Janet,

As much as we try we can't stay upbeat all of the time. Emotions get the better of us now and then. After we went to Philly for a neurologist appointment I wrote my feelings down. I forwarded a copy to my attorney and we were going to use it for my last question on the stand. The best thing I can tell you is process what's going on around you, accept it, manage it, and move on.

Matthew's hips were never tight, but they were out of line. We take him to a chiropractor to address those issues.

I look at a pile of tears as something to cleanse the soul.

Cindy

I am TBPI so it might be a bit different for me. I have the ups and downs to deal with on my own, My parents have been thnere to listen to me vent though. Just this week, Wednesday therapy was GREAT! I was re-evaluated and things were looking much better! Therapy that day was GREAT too! I could do so much and my PT was EXCITED! Yesterday I went and it was unrealy how BAD of a day it was, I jsut wanted to cry! Here I was making progress and then 2 days later, back to nothing! This gets very frusterating to me too! I have been doing PT now for 3 and a half years! The past few months I have started with aqua therapy, so I have been going 5 days a week! It really started to get to me so I said NO MORE! I NEED A BREAK! Right now I am just going 3 days a week and its going well! This is a long and on going process and you can do it!!!!

Keep your head high and say extra prayers at night!

Court xo

Janet,

I haven't been through the same experiences you have had with Danny, but my heart goes out to you nonetheless. There have been different things about the injury that I've learned along the way that have given me jolts of reality and sadness, and I have heard about the potential for scoliosis.

I do think it helps to talk about it, so it's good to come here and get it out! At times when I'm sad, I just try to count my blessings, that our children are HEALTHY, normal, wonderful kids! Don't ever lose sight of that! If you ever need to vent more, email me anytime!

Michelle

Janet,it is a roller coaster ride.As a father of a 21 year old robpi son, it does not get easier as your child gets older in some cases.My son is going through a tough time. Some one mentioned to me a little while back,"that you are only as happy as your unhappiest child".When my son is in a good mood,it affects my disposition and vice versa.The guilt will always be with us.As long as you know you have done everything possible,that must suffice.As a caring parent be there for them and be positive .Good luck,this affects not only child,but the entire family.Hang in there,Lenny

Thank you. You all are so kind and have helped so much with your wise and wonderful words of encouragement.
I really appreciate the info that others of you have heard about scoliosis potential. That, in an odd way, makes me feel better! At least Danny is not the only one!
You're right - we ARE allowed down days, aren't we?? We'd be downright weird if we didn't feel overwhelmed at times, I guess.
I just want all of you to know how grateful I am to have all of you to commisserate with. Guest, Vanda, Cherie, Cindy, Court, Michelle and Lenny - thank you.