jen's blog

It's been a while since I've written anything.... busy with work, kids, and art.

My husband and I have a video on youtube. If you go to www.youtube.com and do a search for 'Joseph Merrick', we're on the first page. You'll see little hands on a piano. We play under the name 'o my machine'.

I have to give many many many thanks to the Shriners... both in Greenvile and in Tampa, Florida (yes, you guys... Ron Gingras, Debbie, Danny, Fred... all of you). I grew up there and those people celebrated my every accomplishment. I remember when I was a little girl I brought my roller skates with me to the hospital and the staff stood outside while I skated around. In the hallways, everyone says hello. They really treated me like a was special there. It wasn't just that they made me legs... it was a whole experience.

Lots of pictures...

Here is the first prosthesis I used, before I had my 'little foot' amputated.

The ones of me sitting on the floor with the package are me opening my first 'bending leg'. After my amputation I wore a straight leg prosthesis (as in the picture when I'm sitting on the floor). Back in the day, they would just mail you your leg, isn't that funny? I remember they would make it a little taller than normal so that I'd grow into it. Whew!

Here is also a picture of my lovely family, one of me and my oldest daughter dancing.

I was born in 1977. My father is a police officer and my mother is a famous doll maker. When my mother was pregnant, ultrasounds were not the norm, so my parents had no idea about my limb deficiency. My mother says she would tell the doctor something felt different throughout her pregnancy. "This one doesn't kick as much", she would tell him, comparing me to her two other normal pregnancies 10 and 8 years prior. When I was born, I was taken away without explanation and my parents were left to imagine the worst (anyone see 'It's Alive'?).

I'm 31 yrs old and my parents decided on amputation of my right leg (severe PFFD and severe tibia/fibula marlformation). There was really no other option on that side because of the severity. I wear an above knee prosthesis and function just fine (I have a 5 year old and a 4 month old). I have PFFD also on the left side, but only have a short femur, the lower part of my leg is pretty much OK. I did not have limb lengthening on that side (because there was really no necessity, since there was no other leg to match it).

I've found that not every prosthetist is capable of dealing with a PFFD residual limb. As we all know, there are many issues to address for us... unusual limb shape, alignment, joint issues, etc... I finally found a prosthetist that realized he had to align my prosthesis differently than standard above knee amputees. Getting your knee center even is particularly tricky!