United Brachial Plexus Network, Inc.

Christy & Louise

Just too easy you minds I assure we do hold our babies.

Of course we probably hold them different from our peers and I guess somewhat like we held our dolls but, never by the arms... LOL...

I held three babies and my first two are 14 months apart. I realize how differnt I had to work it only because all my friends had babies at the same time I did ... When we become parents we are masters at compensation... I had to do it all over again for the 4 grandchildren too and that was when my kids noticed the difference... I was young when I had my babies so it was no big deal just different... My last two grandchildren were born two weeks apart and over the last two years I have had two at a time hanging on me we sit on the floor a lot and play.

All of my children clapped like me at first and it was funny because they were babies.

Kath

Yes, having to fight insurance co. and find a therapist.
Explaining (again) the "when my arm gets better I will be able to......"
Five yo who has fallen off the toilet yet again because she can do it herself.
The struggles with belts, snaps on jeans, pulling up tights but still insists on doing it herself.
The instructor says, "Hands on hips or hands behind your back", she just can't do it, your heart just breaks.
Remembering the "expert"(even tho you would rather forget him) who said "can you sew?" as you make yet more adjustments in those sleeves.

Things that will melt your heart tho:
Her friends making sure she has the seat belt on her left side and that she can get it herself and without saying anything to her.
Big sister (10 yo) who still insists she is going to be a therapist when she grows up because she has so much experience

Good Luck to your husband, hope this helps; and added some things that just remind us.

Louise: I mailed you the correct address. I have been trying to get that corrected since the board moved to this format.

Yep, Katie covers her ears, rolls into a ball, her heart races, you get the picture, anytime she hears too much noise. It doesn't even have to be real loud or unexpected either. I have no clue how we will get her on a school bus if needed because she goes nuts when one passes us in the car even. That is funny about the breath too--she still needs assistance on the potty so she has a small step stool to allow her to do as much as she can alone. She always has us sing "what's on your farm" while she sits there but she will scoot that foot stool way back and tell us I want to sing but I don't want to feel or smell your breath. And she can't stand for air to blow on her hard or hear the car air conditioner running high. Turn the fresh air off..hurry! And she won't even visit me at work any longer because everyone in the office wants to visit (we all do this, not just for her) with the others babies. She starts yelling too many too many I need to go--patting the air with her hands and gets louder with each shriek. It is just easier to avoid the upsets unless necessary. I try to keep her different doctors to a minimum as well because of it..it is hard on her and the staff with her favorites even.

Zach is 7 years old with left OBPI. Here are snippets from all the years. We've stopped focusing on worrying about what he won't be able to do, because Zach isn't interested in that. Never was.

1. Infancy was hardest, because he was so vunerable and fragile. Hard to make life altering descisions for a human being unable to input themselves.

2. Watching peopel crowd around to welcome other babies to religious gathering and remembering how people watched yours from a distance, as though paralysis was something catching.

3. Learning several new medical languages.

4. Learning about the intimate world of specialized pediatric care.

5. Being at Seashore House and marveling at the courage of a little kid with massive burns pedal a trike up and down the hall, laughing, and coming to believe that if that kid could overcome such horrific damage, that Zach was going to be OK. Feeling like I had received a special gift by being allowed to see that kid getting on with his life.

6. Learning to calmly and dispassionately negotiate for OT/PT services at school. I say dispassionately because while I feel a great deal emotionally about getting the care, I realize that I have to think along IU's guidelines and work from that.

7. Trying twice to sue for malpractice and being told that I received the minimum standard of care and by law that was all that was required. I couldn't face getting that letter again from a law firm so we haven't tried again. We chose instead to believe in Zach's own talents and strengths to see him through.

8. Making a split second decision to leave full time work while at TCH when realized that he was going to be operated on and was going to need a great deal of intensive care afterwards. Realizing that for all the work I have put in I do not gain any paid benefits, career advancement, or retirement payments, and have gone from being a financial participant to being financially dependent on my husband's income. It took two of us to buy our house, and things have been frighteningly hard. I'm 42 years old, and feel and look used up.

9. Making sure to balance time, and resources between our two children, and making decisions for Zach's care within the greater framework of the whole family.

10. Fending off nosy and downright rude questions from strangers about what happened to Zach. He is currently in an airplane splint, and at least 2 -3X a day we are approached by somebody wanting to know what "he did to himself". Twice I have had to tell people forcibly to get away from my son because they were frightening him. 12 weeks of casting and splinting X 3 approaches a day = 252 privacy impositions, and school hasn't started yet.

11. Watching Zach and realizing he's just a regular kid with an arm problem. He is turning out to be gifted, like his older sister, and he just takes this all in stride. So long as he can make his "creations" (his phrase) he is happy. While in cast or splint, accomodate by easy on off clothing. Potty issues are more because of little boy lack of concern than physical issues, except for when he is restricted by cast + splint, then he needs help. I figure so long as he is not running around naked, he's doing ok. We are not very fashion conscious here.

12. I worry about when he gets older, will there be predators at his school who prey on kids built differently.

13. Hardest of all I think was losing the illusion of the future being somthing I could trust in and look towards. In the space of a few years have had to deal with Zach's medical problems, a scamming employer who stole thousands of dollars of pay and SSI$ from me and several other employees, and my husband being diagnosed with a life threatening illness that may require an organ transplant. My own personal goal right now is to get out of survival mode.

14. The medical aspects for me haven't been the hardest - because of elderly relatives, I spent alot of time in hospitals when I was in my teens. Medically, you do what you have to for your child. Like I said, Zach's earlier years were harder because we had to make all the choices for him, and was always afraid we'd make a wrong one. But he has done well, and after some of what I have seen kids grappling with at CHOP and Shriner's, I now have more faith that Zach is going to be just fine. He couldn't run until he was 3 years old because of severe internal rotation, but he runs real fast now. He has almost perfect singing pitch, an incredible mind, is very kind and has a great laugh. And he knows how to love.

Stacy