Frankies Mod Quad

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Mare
Posts: 708
Joined: Mon Mar 10, 2003 5:30 pm

Re: Frankies Mod Quad

Post by Mare »

Sorry I meant to type Kamren buts it early Mare
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Frankies Mod Quad

Post by Carolyn J »

Hi Mare & Frankie,
I'm all for the splint burning party!! Pictures please, when it happens. You are welcome to click on my name at a post & email me...in fact anytime!

How did the shampoo experience go?? I am curious about ALL things Frankie & Dave!

HUGS,& HUGS,
Carolyn J
Adult LOBPI


Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: Frankies Mod Quad

Post by hope16_05 »

Mare do you have a pic of Frankies splint "Dave" I am curious to see if its the same thing I had when I was ten.
hope16_05@hotmail.com

I hope Frankie's feelings towards Dave get better, as they will be spending a lot of time together.
Hugs,
Amy 19 ROBPI from MN
Amy 28 years old ROBPI from MN
Mare
Posts: 708
Joined: Mon Mar 10, 2003 5:30 pm

Re: Frankies Mod Quad

Post by Mare »

I don't have one but I will take one and email it too you
Mare
Mare
Posts: 708
Joined: Mon Mar 10, 2003 5:30 pm

Re: Frankies Mod Quad

Post by Mare »

This really bites `I have spent all day calling looking for OT/PTs that work with BPI and pillow splinting and after about 30 calls all saying they can't help us I find one that does both but they can't fit him in there is a waiting list what do I do now I'm starting to lose it. Mare
User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: Frankies Mod Quad

Post by hope16_05 »

I would say the next step unless you are able to drive long distance would be to call around again and find one who is willing to communicate with the dr. and learn all there is to learn to help Frankie. A new therapist will most likely be willing to read up and learn every thing possible. But older ones will too, my OT is awesome at researching to find a solution.

If you want some one with experience, you may end up driving long distances to finally find some one who can see Frankie and who has experience.

Good luck!!!
Hugs,
Amy 19 ROBPI from MN
Amy 28 years old ROBPI from MN
kamren
Posts: 262
Joined: Sun Feb 15, 2004 7:19 am

Re: Frankies Mod Quad

Post by kamren »

My splint was a custom one that I had to go in and get fitted for. It held my arm straight out to my side (like I was signaling for a turn) It was make of metal and some kind of plastic. It too used velcro to attach. The velcro went around my waist, another over my non BPI shoulder, two on my BPI arm and 2 around my hand and wrist. It was adjustable for supination and I went back every 2 weeks for them to adjust the supination more.

It cost me a fortune because our insurance was sure someone in plan could make it, but Dr Shenaq was adamant that only this Dr could. So we ended up paying for it out of network. Surgery and splint were 3 years ago, I just paid it all off this last summer.
rachelcasa
Posts: 729
Joined: Mon Apr 21, 2003 11:45 pm

Re: Frankies Mod Quad

Post by rachelcasa »

Mare,
I sent you an email last night. I'll check my mail when I get home from work today and if you would like me to I will send you some photos of my pillow splint. I sure hope its the same thing so it will help you out.
*HUGS*
Hang in there.
Joanie
Posts: 499
Joined: Sat Aug 13, 2005 9:03 am

Re: Frankies Mod Quad

Post by Joanie »

Glad to hear that Frankie's surgery went well, he's recovering, and has a good sense of humor. Hope you find a therapist soon.

Joanie
Mare
Posts: 708
Joined: Mon Mar 10, 2003 5:30 pm

Re: Frankies Mod Quad

Post by Mare »

Yes Rachel I'd love to see the pics maybe it can help me figure out how to position the straps on Dave to make him sit still( for those who don't know frankie has named his splint Dave) Great news I started thinking, The Childrens Specialized Hosp said they except my insurance are only 30 min away and have a great deal of experience with BPI but there PTs are all booked up Frankie only needs a little PT mostly OT increasing the splint and all so I called back and ask for an OT app turns out the OT has worked with Dr Naths kids before knows all about pillow splints and the mod Quad can do his PT and is free to see us 3xs a week Problem solved but why do it always have to be so hard???? MaryAnna
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