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So the good news is that we left with a leg yesterday.
The bad news is that the leg doesn't fit perfectly, and so we'll go back next Friday to get a completely new leg that Paul is making.
I have so many mixed emotions. We are making progress, moving forward and so that is good.
Even though the leg we have is not the "real" leg, we can start the process of Eli getting used to it. This is really a test of patience for me.
At the appointment yesterday, Eli would cry as we were putting the leg on, and taking the leg off. He did a bit better while it was on then he did last week at the appointment. Right after Paul got the leg on for the first time, he left us so in the exam room to just see what happened. Well, right after he left the leg fell off. To make a long story short, the liner is a bit too snug, so Eli's leg doesn't fit all the way inside of it. Since the way that the leg is held on is by the liner being up above the knee, it can't stay on all the way. Paul temporarily fixed it by making a hole in the bottom of the liner, and then using a pantyhose - crazy, huh? So after we put Eli's sock on his leg, we then put the pantyhose on the leg and then thread it through the hole in the bottom of the liner. As we then pull the pantyhose we push the liner up on his leg. It actually works really well, but obviously is not a long term solution. I think there is some difficulty getting the liner to fit just right because Eli's leg is "meaty" as Paul says.
We also left Eli's left shoe with Paul because he will need to insert a 3/8 of an inch lift in the heal of the shoe. So Eli can't really stand with the leg we have right now, because of the length difference. His right knee bends significantly when we try to stand him up.
We are putting the leg on for 30 minutes and then leaving it off for 2 hours. Those 30 minutes aren't pleasant. For the most part, he just sits there. He won't move. Usually when he crawls, he leans forward and kind of rolls over his right leg, well, with his leg on he acts like he cannot do this. I know he can, because he has, but it is obviously a huge adjustment for him. He cries, crawls a tiny bit and wants me to hold him. Its hard right now.
I have so many questions. Does it normally take 5 weeks to get a leg made? When will Eli act like himself with his leg on? So much is an unknown.
I just have to be patient and have faith that it'll all work out.
Lets talk soon. Everything sounds normal from our experience. Its heart wrenching isnt it. But those kissable cheeks make it all worth it in the long run.
ReplyDeleteHang in there
Hi,
ReplyDeleteOne average, it's taken about a month to get a leg built for Maria. However, Maria's first leg was built in two weeks! It was really simple, not fancy at all, but it got her up walking.
We've been really happy with her prosthetist and there only been one time (many years ago) that they basically started over from scratch and built a completely new socket when it became obvious the first one wasn't going to work.
One thing to keep in mind: with Eli being so small, he grows so quickly in a proportional sense right now that there are probably a lot of changes in the time it takes to get the leg built. I think that all kinda' goes with the territory when it comes to little kids (unfortunately).
Hang in there if you can, but keep in mind that you can change prosthetists if these people don't work out. Give them a chance and see if the new socket is successful.
-Jeff
Eli looks wonderful in his new leg! When my Hannah saw his picture with his leg, she pointed to him and said "walk" :) As if to say, "Now he can walk like me :)
ReplyDeleteHannah's first leg only took two weeks to build, but her's does not have a socket. It's held on by a strap over her knee. When we took her to the Shriners in Tampa (before moving to KY), we were told it would take four weeks of fittings before the leg was complete. So I guess it depends on how it's made and who makes it.
Hang in there, my friend. It took Hannah 2-3 weeks of crawling in her leg before she was comfortable with it. There were times when she would just tremble when I stood her up on her prosthesis because she was scared. It takes time. I know it's difficult. It's wonderful to see Eli smiling in the pictures!! You guys are doing great!