We are new to this sight, and very happy to have found it, we are in the process of adopting Alena, she has severe bilateral PFFD. She has no hips femurs or knees. She has had surgery to correct bilateral club feet, and had surgery to fuse a partial knee tht was in the hip area. She uses an electric wheel chair for school and outings, can stand, but walking is very difficult, she is very heavy set, runs around on all fours, has the cutest skip, and stands on her head. We would love to hear from others with Bilateral, and Alena would love to see pictures of other little kids so she does not feel so alone.
Comments
Welcome to the board!
I'm a 31 year old high school teacher with bilateral PFFD. The hip joint on my right side is malformed, with the femoral head being bullet shaped, and the hip joint is completely absent on my left side. I walk with forearm crutches and use a wheelchair as needed.
How old is Alena?
Speaking from experience, one of the best pieces of advice that I can give you is to work with Alena's doctors and a dietician to get her weight under control. The stress of PFFD on her joints is enough; she doesn't need a lot of extra weight adding to her pain. Trust me, it makes a huge difference (I've lost a fair amount of weight over the past several years, and the difference is tremendous).
Little kids don't need to diet, necessarily. Often, it's just an issue of trying to increase their level of activity, which can be complicated for a child with an orthopedic disability. Would she like a bike that's operated with hand pedals? Does she enjoy swimming? Personally, I love swimming because my body feels like it works in the water.
I hope that this doesn't seem too preachy. Alena sounds like a great kid and she's lucky to have found you! Best of luck!
Linda
Not too preachy
Not too preachy at all. You're right on! I saw the light eventually myself and got into shape. Thank goodness! With 2 little ones, it's hard enough chasing them around!
Jen
Congrats
Congrats on the addition to your family. Someone on this site created a book w/beautiful images of children with limb differences... I'm planning on getting it soon and maybe you should consider it. Hopefully too we can get a big meeting together some point next year. I think it's great that you're looking into this and with loving, supportive, you're little girl will do great!
I think the advice on the other comment is right on. I made the mistake of gaining weight when I first met my husband and I started having all sorts of pain EVERYWHERE in my lower body. Since I got back into shape, which was about 5 years ago, I'm doing much better. Eating healthy and being active is soooo important for us. If Alena uses a wheelchair a lot of the time, wheelchair sports is an awesome form of activity. If there isn't a group in your area, maybe you guys could start one!
Good luck!
Alena
I am so happy to hear that Alena is soon getting a the loving home she so deserves. My child is 7 years old with bilateral PFFD, missing hips and knees with short asymetrical femurs. I've been off the site for many years due to many things. You will always want to come back to this support group because the people on it will truely help you in many ways. She will be a blessing in every way to you. Best of wishes.