United Brachial Plexus Network, Inc.

Hello everyone.. I'm posting as a guest out of guilt and shame.. My child is close to three months old and is still not in pt/ot regularly. We received a lot of resistance from her pediatrician in starting therapy and were referred to a therapist that couldnt stop talking about how cute my baby was and did little in the way of therapy.. Then the therapist called twice promising to schedule another appt but never did.. Last week (weds) I requested another referral but have not received it yet.. but in the meantime I haven't returned the paperwork to our birth to three program to possibly get my baby started with therapy through them (I dont know why!)... I slacked off in doing his rom exercises and for a couple of weeks ignored the injury.. He has yet to see a specialist/neurologist b/c again, resistance from his pediatrician.. changing providers is not an option.. My husband is in the army and we are restricted to seeing military doctors..We live on a very isolated base.. The nearest children's hospital is 75 miles away and we only have one car thats not very reliable..
We are technically "poor" and have two other children, 3 and 7, with nobody to watch the other kids while I try to devote some attention to our son..
And although I try not to be I am intimidated by the doctors here. I have a hard time speaking up.. I feel like such a bad mother. He does have some movement but I can't help but feeling that if I had been more aggressive from the start that he would be further along. Needless to say, my marriage isn't going to good these days and my husband has suggested more than once that I take the kids and move to Philadelphia, where he's from, and stay with his mother (who I do get along with) to try to get our son better care..
Thank you for listening.

This injury can be overwhelming. So many decisions, so much to do, and lots of choices and options. Please don't be so hard on yourself. It is not a life-threatening injury. What happened to you and to your child was, most likely, a huge shock, and you are probably still rebounding.

But you can begin. Maybe writing this post was the beginning for you. It sounds like you know the steps to take.

If you don't mind, I'd like to suggest a way to begin. When I have a big task before me, I break it down so that I can feel a sense of accomplishment. Take it a step at a time. Prioritize what is most important and begin there.

You mentioned Philadelphia as the home of your mother in law. There is a Shriners Hospital there with a bpi clinic. They don't charge for their services. I'd start with a visit to them and hopefully your inlaws can give you some support with baby sitting the other kids while your are there.

Don't forget to take care of yourself.

Nancy

Please don't feel ashamed- sometimes your desire for your child's recovery can cloud your judgment.
When my son was 3 days old, our local paper ran a story about how a lady was involved in setting up a support group for children affected by BPI
All my family ( my husband too) kept nagging me to contact her - but I can tell you that I was completely unable to contact her - I was adamant that my son would recover and I told everyone that "I'm not the sort of person who joins support groups"
I really couldn't cope with the concept that this was a long term prospect.
Each person is an individual and must deal with this whole injury in their own way - you aren't doing anything wrong- you are doing things your way - and that's the right thing for you.
As Nancy says, it's not a life threatening illness, missing a few ROMS won't affect your baby's recovery to that extent.
Maybe visiting with your Mother in law will be helpful - I'm sure she will want to help and support you as much as she can - maybe she could take over doing the therapy for the baby for a little while - it doesn't matter who does the exercises, and then you can spend a little time caring for your other two children.
You will get through these times - take the help that is offered to you -remember you have been through a trauma too - go visit with Mom in Law - let her share the load.
When I did seek help from the support group, it was because I was ready to - and it was more beneficial because I was ready to listen.
You will get to the "right place" (emotionally and psychologically) soon.
You will be in my thoughts and prayers
Karen

Dear Guest:

You are probably still in shock or maybe even denial that your son was injured. When I say denial, I basically mean that you don't want to believe that he is injured and by not putting your all into his treatment you don't have to think about it as often.
You can change everything now. It's not too late. Take it one day at a time and start by doing one thing at a time each day. Tomorrow call Birth to Three. Get an appointment. Maybe the next day or a couple of days later try hard to get your referral to see a neurologist. Every diaper change do his ROMs. Maybe you can even do some while you are watching one of your favorite tv shows to bring your mind a bit away from the ROMs. I used to put on music by my favorite band b/c that always keeps me in a good mood. I would sing to her and do her ROMs as if we were moving to the music and dancing together. Find a way to make it easier on yourself.
I also felt guilty for certain things, but have learned that as a mom I cannot do everything perfectly. I have done my best for Ella and I continue to do so. It's hard, especially in those first several months. Don't feel guilty! If you continue to feel guilty you will not be able to stay strong enough for your son. Give yourself some praise that you have done at least somethings by now to better his arm. If you can stay strong and keep your head up this will make a world of a differnce for his recovery. Negativity can make a big hole in your world, so try to stay positive!
We are all here for you!
~Krista~

I too have been through bouts of guilt - my daughter is 5 months old. What I found to be very helpful, if you can, try to get around other people -- a friend, a family member, anyone, just to take your mind off of things and have some company.

Next, of course, get started with the ROMs, it is important that you start and not feel guilty for not doing what you already missed. Get yourself set up with a neurologist because there are important periods of intervention with this injury -- and sign on here often to talk. HAving a network of people who understand what you are going through is a HUGE Help.

I've found that everyone here is really great and it's just terrific to feel like you are part of a group.

If you ever want to chat, send me an email shellie1@patmedia.net

Where are you from?

- Michelle

You are not alone. I am a SFC in the Army and my son has a lobpi. It is sometimes difficult to tell the doctors that what they are doing is not enough and that you need a referral to a specialist. If you click on my screen name it will give you my e-mail address. Please e-mail me and I will give you more info. This is an excellent first step.

That's got to be one of the bravest postings I have read.

The shock of this injury is overwhelming, you are most definately not a bad mum.

I go through bouts of missing pt, and I am in the fortunate position of having lots of support from doctors here, we are human after all.

I think a stay at your mother in laws is a great idea, even if only for a short while. Josh is 5 and I still am stunned at what happened to him, this is almost impossible to face alone.

You did not do this to your baby, or wish it on your baby. This is not your fault, but you are left to pick up the pieces when at your most vulnerable, as the stunned mother of an injured child.
Another mother (in law) to help is invaluable, let her help relieve the burden you are facing.

God bless you and your family,
Pauline

WE are prior military. Fourth child with BPI born in a military facility. It is a night mare and I am so glad that WE are out. What you say can and will ruin your husband's career..........but that did not stop me. I said what needed to be said and got my son the treatment he needed. In the end it was his NAVY career, but now 5 1/2 years later my son has great ROM, and is doing so well, out marriage is back on track and we are civilian. I feel for you and understand, all you can do is protect your child......by the way.....we won a lawsuit against the military one year ago.....good luck...

Congrats to you for getting o board....the first step. My 23 yr old daughter has a rt tbpi and we've had to struggle too. What caught my eye is when you mentioned the Birth to 3 program. I am a social worker for the state of Mich and work with the birth to 3 and you should check it out to see what you have there. My agency has a specialist in the program. Also, because you have a special needs child you should be eligible for respite care, where mom gets time to re-charge and re-gain her sanity, with hubby, just other children or alone. You're just as important. You can check these programs out through licensed childcare programs or agencies. At the same time, you're finding out more info for your little one. With these kind of situations you sometimes have to look ahead and not just for today. Good luck and if there's anything you might have questions about feel free to email at my address. You are a woman of strength or you wouldn't have posted. That's great. Lots of people to help you on the boards. Keep pushing until they're sick of your questions, I mean the drs....question, push, insist....that's what they are there for..it's their job. Shelley