United Brachial Plexus Network, Inc.

Well I took the step last week to buy some adaptive things for Maia. It was kind of like a mental decision - stepping out of denial. I want her to succeed in doing day to day tasks but she just can't do certain things. At first I thought I was giving up on her and now that I've seen results - it's just quite the opposite - now I'm mad at myself for not doing this earlier!

So I bought her a spoon with a right angle and when she saw it her eyes popped out of her head and she immediately began to use it. She can't supinate (yep - it's gone!) and her hand has tremors, so I bought her a spoon with a tubular handle, with a right angle bend and has a lip that holds the food in better for those with hand tremors. At first she said - it was too hard and then I showed her how to hold the spoon at the correct angle and I have to tell you, she ate her entire dinner with her affected arm!!! My husband and I were just shocked! She has NEVER used her arm to eat.

She scooped the food and then used the table to give her arm support and brought her head down to the spoon a bit - but it's just a start. Maybe in time it'll work better for her - needs to get used to this.

I am just so proud of her - she was so proud of herself - you could see her little self esteem bucket filling up.

Maia's therapist always said to me early on - Francine, if she can't do it then we will teach her, if she still can't do it then we will teach her how to adapt, and if she still can't do it, then we will buy her adaptive equipment. Well I'm so glad I got her this thing - it's going to change her world!

anyway - there are tons of catalogs on the web...
(boy did I go shopping!!)

-francine

(I'll try to get a picture later)
(I had no idea last night's dinner was going to be picture worthy!!)

When did the supination go away??? Why do you think it happened and did the docs have anything to say about it? That must have been a heartbreaking realization.

Poor little peanut.

Cool...actually right angle spoons and forks are available in Europe as "normal" toddler utensils. Except they don't have the lip to hold food on. My mom brought me back a set...I think the US baby utensil manufacturers are a step behind.

Good luck with everything!

Francine,
I think this is a huge step.
I am of course still learning about living with this injury, it is a life long process. And one of the things I am coming to realize is that compensation in medical terms is not always the best thing to do because of the long term effects on the body and that using adaptive equipment would have been better in the long run.

Let me use an example of driving. Because I could not extend the left arm, I used my right arm to reach all the stuff on the left side of the car, often times straining that arm and certainly contributing to the overuse. Now I have adaptive equipment for the car. Much better and much healthier.

This is not 'giving in' to the injury or making excuses. It is realizing that one must look at a lifetime of living with it and choices ought to be made early on to protect the uninjured arm because it is, by default, going to be overused.

Nancy

Supination went away just two days after that picture was taken... I'm so glad I got that picture and so glad we celebrated it. Dr. Pape told me this weekend that if the body does it once, the brain pattern is set up so that when physically possible it will happen again.

Why did it happen ? Well the stretch position of the splint put it in that supination position and since her arm had post splint atrophy - there was nothing to really make it turn out of that position. Now that she's working on that atrophy and her arm is stronger, the stretch position just doesn't even exist anymore.

It was more of a shock to see her supinate and made me so sad to see it go away. But the picture...I will have that picture of her supinating forever and maybe one day, it'll happen again. I will soon take the supination picture off the site, however, so that Maia doesn't see it and get upset by it.

Dr. Nath told us up front that Maia may need more surgery to try and get supination. He was very honest about the pros and cons of this surgery and what we would get and not get. It's just the harsh reality of it all.

Life goes on and mommy goes out and buys adaptive equipment!

-francine

Yea! Maia. You go girlfriend! I'm always caught in the middle,too. Between the therapists and the doctors wanting the correct movement and Michaela's uncanny ability to compensate if needed. When it comes down to it they have to live in this world and if compensation is needed then they've just found a way that's better for them. Francine, sorry about the supination. I know that was a disapointment for you. Chin up! Lee Anne

I was wondering about Maia's supination! Sorry to hear that it's gone...for now!

The adaptive equipment they have out is so cool. There's so much out there. Glad to hear it's working for her.

Tell Maia to keep up the good work.

Missy

New to this site - did not see any reference to where you found the adaptive equipment.

Also - have you heard anything about overcoming the insurance company limit on # of visits per year for P/T & O/T. My insurance limits us to 60 per annum and at a minimum of twice a week - The uninsured expense is killing us. We have been fighting with the insurance company with "letter's of medical necessity" with no results to this point.

Thanks and I look forward to learning more from other more experienced parents on this forum.

Carl,

Regarding insurance, it's a battle I know. We have always been able to get approved up and beyond the insurance limits. I am not sure what Insurance Company you have and they are all different. But what helped me was getting a Case Manager. Dealing with one person and having her/him get to know the medical needs of me child as well as the challenges and goals. When I need additional approvals, I call them relentlessly (almost every day, sometimes 2 & 3 times a day), I ask her what exactly do you need from me or any Doctor for approval, then I make the calls to make sure the Doc. or Therapist has provided the necessary paper work. In the beginning I think I got approved because she was really tired of hearing from me and having me plead my daughter's case over and over. For the last year she has really taken a concern for my daughter's care and helps to push insurance issues along faster and smoother. We also see an out of network OT and she got us in-network coverage. You may very well be doing all this already. Just fight and ask them "What do you want and what will it take". Best of luck to you.

Julie Wolfgram

Francine

I can't say any more then Nancy said.
I was always aware that I had to keep trying. I did not understand that compensation was not always a good thing.
I have started to buy equipment now that will protect my hands from further injury. Some of it will prevent further wear and tear. I think what you are doing is great for Maia. Each hand has its own task.

I am now pampering my self a bit with tools that help me... I felt very uncomfortable doing it... I felt like I was being a big wimp.....
so getting Maia use to equipment that makes life easier for her now is important...
She need to know that it is OK to use special things.
Just a suggestion think about buying some tools for the house and everyone start using them - Maia will think it is normal to use tools that make our life easier.
This web site has Kitchen etc...
http://www.ilp-online.com/html/general_ ... stion.html


Sorry about the supination loss... I feel for you ...
Kath