Sami is now 4 years old. She is as active as just about any other 4 year old girl out there. She has class-D pffd, affecting her left leg. She participates in gymnastics (she can do a cartwheel now...but loves the uneven parallel bars the best). She also LOVES to swim, which has to be really good for her, right?
Now she's at an age where she is more aware of people (mostly kids) being more aware. While playing on a playground, some kids were asking about her prosthesis. After about the 3rd kid to ask, Sami said "It's just my leg, would you just drop it?!" I love her spunk...but, I also worry how this is all going to affect her in the long run. It's always great to read about the older people and how they are doing. As parents, my husband and I just try to keep encouraging her and supporting her. She amazes us all the time and we really couldn't be more proud of her.
We still question the right prosthetic for her. It seems like there are pluses and minuses no matter what route we take. Not to mention the big decision: to amputate the foot or not? UGH! I mean, one of Sami's complaints is that she can't run as fast as the other kids and she can't ride a bike like the other kids. Her doctor says if sports are really important, then I should think about amputating the foot. But she's only 4...She may love playing an instrument or singing and not care about sports at all when she's older. So, for now, it stays on.
Anyway, all our children with pffd are so special and so strong. I hope I always feel more pain and frustration that my daughter ever will.
Libbi: Sami's mom and author of "Imagine...Amazing Me" which features several of our special kids from this site!!
Comments
Hi Libbi, just wondering is
Hi Libbi, just wondering is it a straigh leg Sami has. Our daughter has a foot in foot prosthesis which is straight and amputation has been mentioned to us as well but the taught of it kills me. Our daughter is only 23 months old.
Sami's Prosthetic
Sami has had different types of prosthetics, and we're just trying to figure out what is going to be best for her functionally and what works practically. We started withe the Moseley design...but, found as she grew, we couldn't get pants to fit (we live where it gets cold). There were ways to deal w/that (some families cut the pant leg of the shorter leg), but we didn't want to do that. Now, she has her foot pointed down more (so I can get pants on her), but there is the "pole" kind of behind the little foot. There is a prosthetic foot. I'd attach a picture, but I don't know how!! :(
Next Friday we see her prosthetisist and we'll see, once again, what is going to be best for her.
I really don't want to amputate the foot, either. I just want to keep what God gave her, you know??
Trevor's leg
My son Trevor has been wearing a Mosely like device since he was 3. He is now 9 and does very well with it. He plays a lot of sports, organized baseball and basketball, and swims on the local swim team (without the prosthetic) plus anything else the other kids want to play around the playground. The foot on his "little leg" seems to be growing at a slightly slower rate than his other foot, which I think is good because it means that fitting him with pants is somewhat easier. We still tend to have to add material to the pants so they fit over the foot though. Trevor is pretty athletic and loves to play almost any sport, (he really wants to play tackle football but his mom has said no, so far) so the idea of amputation comes up frequently. It probably would be easier for him to use an AK prosthetic, from an athletic perspective, than to continue to keep his foot. But my wife and I can't decide to amputate yet. So for now we're just letting it play out and see what happens. He's a good kid with a great attitude!
Sami's Prosthetic
Thanks for sharing about Trevor. Sami's little legs foot is smaller than her other, too. I know...I can't even think right now about amputating the foot. When she was little...it was easy to battle the "cosmetic vs. function" debate. Now, as she gets older and more aware, I beginning to see the cosmetic side. It's good to hear Trevor is doing well with the moseley design.
curious
The one Sami has sounds really like the one Caoimhe has. How long did it take for Sami to walk after getting her first prosthesis. One last question is Sami's leg straight and does this bother her?
Thanks Louise.
Sami's Prosthetic
Hi!
Sami walked pretty soon after she got her first "leg" which she got at about 11 mos. old. We had her in P.T., which helped a lot. I was afraid to let her walk with some of the toddler walking toys because they tented to flip on my older boys, I couldn't imagine that happening to Sami. However, simple solution that we learned in PT...add a weight (like a leg weight) to the base...or fill the toy grocery cart with canned goods. As soon as that was done, she was walking and within 3 weeks was walking independently (13 months old)!
Right now, the little foot is pointed down, almost all the way, but not totally. It sort of bothers her...she wants to run faster and ride a bike. She can ride her tricycle without her prosthetic on...she pushes it with her long leg only (the long leg is soooo strong!).
We see the prosthetisist tomorrow (Friday)...hopefully we can come to a decision that will work best for Sami.
I want function and Cosmetic and be able to leave her foot in tact...is that too much to ask????? And while I'm at it...I want world peace, no starvation, sunshine everyday.... :0)
just wondering, have you
just wondering, have you taked to any of the other people on the site who have had the amputation. I know a woman with a daughter who just underwent an amputation and fusion this year. Her little girl is four too. They hated the thought of amputation as well. Talking to someone with a child who has undergone the amputation and asking them how the child is doing, any down falls, or any advise may help you make your decision. I know I like to hear it from someone who knows first hand. My prayers are with you. Hope you find the answers you need
The good news
I guess the good news is that I really haven't talked with anybody that has any regrets...with any decision they have made. That's great. I mean, I would hate that someone chose a treatment option for their child (especially a permanent one, like amputation)...and found that it was wrong for them. So, whether it be amputation, this or that type of prosthetic...I don't hear anything but how successful their child is doing.
Info
Hi Louise here long time since i have been on this site. Hope you dont mind my questions just wondering how is Sami doing now or what kind of a prosthestic she is using now and sorry now again but is her leg straight? Thanks for been so helpful.
Foot-in-foot where it's cold
Libbi,
We live in Wisconsin where it gets very cold and have the "Moseley type" device. Snow pants are not a problem - they go over the foot all the way down to her prosthetic foot and she romps around with all the other kids in the snow. For little kids they make snowpants that zip up from one ankle to the other one. Those work great.
When we had a carbon fiber laminate foot we had to get snow boots that zipped up the sides - once she got large enough to have the standard pediatric hardware and a pediatric foot then all snow boots worked (not just the zip up kind). For pants in the winter if it was a stretch-fabric pants we could have it go all the way down to the prosthetic foot, but she prefers to just have the pants stop at her regular ankle and we put a "foot mitten" over that. We have two kinds - the first is a "snowboard cover" that you can buy at a sports store. It's basically a neoprene cover for snowboarding that comes with velcro on the back and bottom. Works great in all weather. My mom also knitted a fuzzy lift cover with a hook and button in the back. It slides right over her foot and keeps her warm and snug, but only in dry weather. If its really cold (last winter it was -40 at times) we put the snowboard-cover over the foot-mitten.
A bit about the lift - at rest her ankle is at a 90 degree angle to the ground and parallel with the foot at the bottom, but it is
also hinged so her ankle has the full range of motion forward and back. She can now (5 years old) ride a bike and pedals furiously.
Hi, I made the decision to
Hi, I made the decision to have the symes amputation for my son last year, when he was 11 months old. I am confident that it was the right decision for us because we did plenty of research and asked tons of questions before we finally came to the point where we could decide and know that we would never regret it. I am amazed at how well my son has done with his prosthesis and also how well he does when it is off. At home he will go for hours with his prosthesis off. With the symes amputation his heel pad is intact and covers his residual end so he uses it the same way he used his "small foot". He uses it to climb and crawl. When he is ready to play outside or we are getting ready to go somewhere, we just put on his "shoe" as he calls it. I am very happy with the outcome of everything. I know it is such a hard decision and I am sure you will all make the decision that is right for you and your child. Best to you all. Also, Libbi I just ordered a copy of your book, I can't wait to get it!!!