So we weren't scheduled for a clinic day at Shriners until March but the best part of living 3 minutes away from Shriners is if I freak out about something I can just call! So the past month little Eddie's left foot seemed to turn in. Actually more the shin then the foot but it gives the appearance of his foot turning so far to the right it can sometimes end up flush with the floor. So I mentioned it to his PT who also agreed that it had changed. So I decided to call and make an appointment earlier than March. We headed out to Shriners Friday and we were so lucky that Eddie's PT was able to come with us. I was glad to have her there to help explain everything and thank goodness she came since Eddie couldn't make it and those appointments are hours long and the baby was getting restless. (Well as restless as he ever gets which isn't too much). So after lots of doctors checked him out here's what we came up with.
First the ortho and pt consulted with our pt and decided that instead of his lesion being all sacral they all agree now that it is more like L4L5. All this means is that the nerve damage is a little higher up than they originally thought. A first I'll be honest that it felt like a little blow when I heard this. Then I realized that what we knew of his sensation and muscle damage was exactly what L4L5 looks like. So nothing really changed for us except the fact that we didn't know exactly what sacral meant. From what it sounds like he was born with a small sacral lesion but we knew it was tethered higher up so the thought is that due to detethering some nerve damage was done which is totally normal during detethering. The nerves get stretched and sometimes sensation can be lost. Ugh, sorry for all the medical info.
Now to explain why his leg is turning in. So the nerves to the muscles on the outside and back of his leg don't fire correctly. This in turn makes the inside muscles too tight therefore pulling his leg/foot in. We have continued to work with stretching it but due to my super strong and wiggly little man his muscle is getting super strong. That's why we've seen more pulling. So the solution is a device called the Denis Browne Bar. They are shoes attached to a bar that can be adjusted to an angle to stretch his legs/feet apart. It sounds way worse than it is. It doesn't hurt him and actually isn't that angled for him. He is set for a 45 degree angle which is apparently nothing compared to kids with clubbed feet who can be at a 70 degree angle. He actually looks cute in it and doesn't mind it at all. I think he actually likes it since it helps him get on all fours! The worst thing about it is while putting it on I almost always get whacked in the face. When I do and I will I'm going to have a big bruise! So don't be alarmed if I'm walking around with a black eye. He only wears it when he sleeps at nap time and bed time.
Next we got fitted for AFO's (ankle foot orthotics) these will help keep his feet at more of a 90 degree angle when standing. Now his feet pull up so he stands on his heels. Due to lack of nerves to his heel cords this will stay this way and won't get better on its own. It could get worse and most likely will and at that point he will need cord release surgery where they cut the heel cord. We want to avoid this as much ad possible since it will leave him with a floppy foot. He'll get the AFO's in a couple weeks and will only wear then when weight bearing and standing. I'm kind of excited since he has trouble with stability from standing on his heels. I'm curious to see how he does. Plus they are very cute and we even got to pick a cool design for them. ( it's a secret for now we didn't tell Daddy what they look like). So you will all have to wait to see them!
All in all it was a great visit. I was a little emotional after and I'm not sure why. We didn't hear anything we didn't already know but sometimes these appointments just emotionally overwhelm you. It's almost impossible to explain. It's one of those just have to be there things. I know that a horrible excuse but I really have no idea.
We don't have anything else going on until the 29th so I'm sure I'll have lots after that between visits and birthdays! Stay tuned!!!