Goodbye KAFOs!

I think we're going to say goodbye to our KAFOs. The saga started back in December when we noticed Xander's foot turning in . . . the rehab doctor at clinic suggested a KAFO and the casting and craziness started . . .

Today we went to the Brace Shop again and met with my new favorite orthotist. She's young but most importantly she's a she I think (sorry to be sexist). I've been requesting to meet with her since she seems to know kids, has a better room with kid toys, and listens! The KAFO keeps pinching him and rubbing his skin so we were going to see about special long socks (the two male orthotist I saw didn't know anything about these socks grr). I also had her look at how the braces were fitting because I didn't think it looked right. Sure enough the knee joints weren't lining up--one inch off on the left and one half inch off on the right. So really these aren't helping him but hindering his walking--not to mention they are a pain to doff and don (my new pt words.)

She suggested that if she were starting from scratch she would suggest an AFO ground reactive brace that came up high on his left knee to help keep it from twisting outward. She sat on the floor and we talked about braces and Xander and what would work best for him right now. Because sometimes the best brace is not the one that achieves correct position 100% of the time but the one that works with crawling, wearing, diapering etc. I so agree. She said we could fix the KAFO he has now, but we'd have to leave them and come back and really we're going to be coming in ALOT to have them adjusted (which we know). I so wish the first rehab doctor, second rehab doctor, or the original orthotist had looked at Xander and said--he's too small for a KAFO, you can't make it light enough, when he's on a bowel program and your changing less diapers . . . then we should talk about bracing higher--but right now while he's so little and still crawling lots lets let you all enjoy babyhood and spring days and not have you in here every few weeks dealing with high braces!

But of course no one said that because no one can step on someone else's toes and no one really listened to us. So moving on . . .

We're set to see our PT on Tuesday. She's interested in putting him in a brace hinged at his ankle--there have been some studies which have shown success with these kinds of braces for kids with sb. This brace would be cast by her and then made in Washington. So there would be some lag time and if major adjustments had to be made we'd have to send it off BUT minor things could be done while we're at PT and I've heard these braces are well made . . . I think it's worth a try to see how it works.

I thought that Megan made a good case for the ground reactive/high knee brace made by the braceshop. And if we were just dealing with her . . .

So a week from Thursday we're also meeting with a rehab doctor to get her opinion. I'm hoping she can help us decide which brace to go for--or maybe both!

Dennis went into Dominick's class to talk about China/Japan. He was the superstar. Sounded fun and exhausting!

This weekend mom and dad came and helped us plant our garden and our front yard. I'm so excited to see the results grow and bloom :) I'll try to post some pictures soon of our baby garden.