United Brachial Plexus Network, Inc.

Haven't you ever just wanted to quit? I find myself, recently, just tired of it all. Tired of the running to doctors and therapist, tired of fighting for benefits and support, tired of excercises, tired of thinking about this injury, tired of trying to figure out how to convince a 5 year old girl who doesn't want to go to therapy or doctor appointments that it's necessary and will actually help her even though all she knows is that it hurts and that she can do it another way that works just fine for her. Is there ever a point where we should cut our losses and go about life as it IS not how it could be with more therapy or surgeries? Am I the only one who ever feels this way????? Just curious!

By the way, hope all is well with everyone!

Love and Hugs,
Cheri, Mom to Katie, 5, LOBPI

Cheri - we DID quit and Maia took on activities that all made sense and replaced the therapies she was in.

Aikido - to teach her how to fall better so that she might not break as many bones
Dance - for balance and core work and coordination
Piano - fingers/hand/wrist
Choir/Voice - diaphragm strengthening and breathing exercise
Cello - core & shoulder
Drums - core, coordination, inner metronome, four limbs moving differently at one time (wow!)

All of it builds self esteem.... build self esteem and your child feel less different, less victimized.

We do have an OT & a PT that watches over her from afar and gives us tips, ideas, splints and more - when necessary.

We do have multiple types of specialists who we see on occasion to watch over and plan for the future.

There is more to life than the BPI and your child (and you) deserve to take part - fully and completely. Doesn't mean you're going to stop worrying - doesn't mean you're going to stop watching and assessing.... I think as parents we will always be watching. But your child needs more. Go out and have some fun!!

Cheri
By the time Frankie turned 7yrs old he was done. He wanted nothing to do with anything pertaining to his arm and I gotta tell you I was warn out to the max, so we stopped. No ot no surgery nothing and at 13 he decided he was ready to start again so we did. My decision to stop was based on my child's mood and personality changes and I had to choose which was more important his arm or the rest of him. I'm not saying this is the right choice for everyone Frankie's injury was the worst possible and not much could ever be done to get him useful function even now his surgery was to relieve pain and his OT is to keep him from getting tight in the neck and shoulder. But I know how you feel and maybe you could just give katie and yourself a month off to rest and regroup. How does Katie feel about her arm? It never bothered Frankie and still doesn't he says its just an arm, but he is a boy I think it may affect girls differently, what does the therapist say? Please know your not alone in your feelings I still get tired but its not as bad as when he was younger since now he can do his Ot by himself and we just go once a month to make sure he's doing his biofeed back correctly.
Mare

Dear Cheri,
It sounds like youu need a "break" too. How about JUST MOM Time with a massage, pedicure or something meaningful to you??.

Off my SoapBox now...lol.

((((HUG))))
Carolyn J

Cheri,
I am sure some would disagree but I say that its ok to quit. Check in with the bpi community to see if there are new advances every now and again. But its ok to have a break.

Let Katie be a little girl like all of her friends and when the time is right, she will let you know that she needs therapy again or she would like to see a doctor.

We all need a break from reality. Reality says this is never going to go away, it will bw part of our lives forver and we need breaks from that reality.

Maybe talk with Katie's doctor and see if he/she thinks it ok to have her checked maybe once a year or every other year. And take a break. Let Katie pick a couple activities to keep her moving so she doesnt lose range and develop contractures.

Good luck with what ever you decide to do and email me if you ever want to chat.
Hugs,
Amy 20 years old ROBPI from MN
hope16_05@hotmail.com

Hi Cherie,
Bradley and Katie are the same age. I know exactly how you feel. We stopped formal therapy. I'm back in school,and the kids are back in school full time. We needed to get on with our lives. I felt as if Bradley had reached his maximum potential as far as function goes. He functions as a normal five year old and has blended in beautifully with his classmates. It sounds to me like all of you need a break. You deserve it!!! We have decided that Bradley will not have anymore surgeries at this time. Maybe when he's a teenager who knows? But for now, we needed to get on with it. Yes he does things differently, but always completes the task. He's the hardest little worker I've ever met. His therapy is working in the garden or helping his dad with his model helicopters and putting trains together. The child has a major obsession with trains! Take a step back, dont stress, you're a great mom and have done everything you can for her. Pat yourself on the back and please don't feel any guilt about wanting to take a break!

We stopped when Juliana was around 6. The school stopped giving services and there was just no way to fight them-we had exhausted our directions. She seemed happier, more content. Yes, I still massage; because she likes it.

Like Francine, we went to activities that she liked. We didn't put as much thought into it, though!
She tried soccer, not a fan. Tried diving, didn't love it. Played basketball, was good, but didn't like the dads who coached (neither did I).

We always try to keep swimming in our plans. This is the first year we havent. I encourage you to put Katie in swim lessons. With other kids. Let her be a part of the group. Swimming is the single best exercise for bpi kids.

Now Juliana is playing tennis. Is it the most use of her left (affected) arm? Absolutely not. But she LOVES IT. Asked for more time and we gave it to her. Her coach is amazing.

Just do what she'd like to do. And get a manicure. Read a few books in the time that you are no longer schlepping to therapy!!

claudia

Wes stopped formal therpay too but Brandon was younger. his doctor couldn't even tell that we had stopped, because I would do things at home or get him to do things that were therapy and he didn't even know. Brandon didn't like formal therapy and the therpists thay gave us were also very tiny and Brandon was very strong. I thought he would knock one of them out with his quick unannouced moves. HE WAS STRONG. Yes, Activities that he likes replace therapy nowadays. Basebasll, swimming, football, even bowling. My oldest son bought him a Wii for his birthday and WOW ! the therapy that thing is. Sometimes you just need a BREAK and in that case you need to take it !!!! GAYLE

OBPI kids just sometimes need to be kids!

I took all sorts of lessons, dance, gymnastics, piano, acting, swimming, skating, biking etc. because formal therapy stopped when I was very young. It was medical policy to say that's as good as it gets. My mother taught me to do things that forced me to use my arm as much as she could and made games out of therapy. I did not realize it was therapy then but I recognize it now. She assigned tasks to each hand as much as possible with the limited functions I had when I was young and changed them as I grew.

You NEED a break and so does she. I felt I lead a normal life and my arm did not rule my life. However, I confess, I gave my Mom a hard time about exercise and did not want to talk about my arm. I just wanted to do what I could do and be a normal kid. I hated always hearing "Kathleen use your arm" but am glad she did all the things she did to keep my arm lose and functioning.

Kath robpi/adult/68

Hi Tired,
I too have found myself tired on many occasions and yet afraid of giving up. Upon my therapist suggestion we did give up when our daughter Najaah was about 1 years old. We then turned to a sort of neural stimulator therapy that was offered at my doctors office we did this until Najaah was a little of over 2. For a brief while we stopped everything and I started to notice her arm tightening up I also notice around this time how much she enjoyed flipping. I spoke with my doctor and we decided together that gymnastics would be an excellent form of therapy for Najaah and she loves it. She has been doing gymnastics for almost 2 years now and you know what my baby girl is pretty good. In addition to gymnastics for the past two summers she has taken swimming we will resume swimming this spring for it is not only good for the erb, it is also execellant for her asthema and like gymnastics she loves it and can swim like a guppy . She is also in a pre-ballet class. At the time, I really did not know for sure that any of these activities would work but I am thankful that thus far they have. In our house we never mention Najaah's arm nor do we accept can't from either of our children often times I believe that Najaah does so well because there is no doubt in her abilities to do what every she wants. My biggest concern has been those who don't live with us. In her short lifetime, I've only had two hateful experiences with others. One was an adult who was making fun of my daughter arm the other was a gymnastics school that refused to allow her to attend classes. I guess this is something I would like to know how do parents deal with the ignorance of others?