Monday, May 17, 2010

First week in the brace


L.E. has been in her brace for a week now. Her dad and I have gotten used to it quite quickly. It's a lot larger than the harness but it comes off much easier so diaper changes aren't as cumbersome. Also, it doesn't fit when she's in her car seat so she gets a little break from it every time she goes some place which makes her happy.
We have an appointment this Friday with the out-of-town expert. I don't count that as a second opinion because the guy will be working with Dr. P. I don't know what my expectations are other than some honest answers about what we're facing and a timeline of how it will pan out. I don't buy clothes for L.E. anymore because I have no idea if she'll be in casts in the fall or if the brace will stay on or what. I get that this isn't an exact science but Dr. P's treatment options change every time we see him. It will be nice to get a straight answer.
I have some questions, too. Will L.E. be able to roll over on her own with this brace? Does this mean her risk of SIDS is non-existent? Will it hinder her ability to crawl? Does her lower back hurt while she's sleeping because her legs are so weighted? (In yoga, it's called "dead-bug pose")
I'm impressed with her ability to push herself up during tummy-time and I hope it will help strengthen her upper body in the long run. She can still fit in her swing and her bouncy seat. The Bumbo, on the other hand, will have to stay in the closet.
So many questions. I haven't done much to find other people in the area that have children with DDH. We saw a couple with their daughter both at the doctor's office and at the orthotics outfitter and I'm still kicking myself for not getting their name. Their daughter had surgery at 18 months. She was still in casts.
L.E. is lucky her DDH was caught on day 1. Every day I hope that she'll have no memory of DDH except for photos and our stories.

Tuesday, May 11, 2010

Odds

We saw Dr. P. yesterday and unfortunately, L.E.'s hips still weren't in place. He prescribed a different brace that will hopefully be more effective. It goes around her waist and secures her hips at a 70-degree angle. It's much easier to get on and off than the Pavlik harness was but it's not as practical. She doesn't fit in her carseat with it on so we'll have to take it off when she's in the seat. She initially wasn't a huge fan of the brace, as in she cried nonstop for a really long time. But she also could have been in hysterics because her grandparents left yesterday after catering to her every whim for the last two weeks. L.E. is certainly a lucky granddaughter.
Dr. P. says a specialist with over 30 years of pediatric-orthopedic experience will be operating a clinic here next Friday. We scheduled an appointment with him so hopefully we'll get the benefit of his experience, too. I feel like Dr. P. gives us a different scenario every time we've seen him and I really want a second opinion. At least Dr. P. has been a bit nicer as time goes by.
So far, L.E. has gone against the grain on every facet of dysplasia. One in 1000 babies are born with it; 80% are fixed with the Pavlik harness; 50% have success with the brace...let's hope this is the one odd she's not against!

Saturday, May 1, 2010

Ten Days

We had an appointment with Dr. P. yesterday and I'm sad to say that the news wasn't great. L.E.'s hips still aren't fusing into the sockets. He told us that if that's still the case in ten days, she gets out of the harness. In six months she'll be put into casts. This is absolutely NOT what I wanted to hear. The casts look horrible. They cover her whole legs, go around her waste and have a tiny hole for her diaper area. Couple that with the process of getting the casts on: it's done in the operating room with all sorts of injections and tests. She'll be in one cast for six weeks; then they take it off, repeat the tests and put her back into one for another six weeks. That's three months total. I never thought I'd be rooting for her to have the harness on longer but I sure am now.
I'm trying to be optimistic that her hips will be fine in ten days but I'm still mentally preparing for the casts. Dr. P. was actually more forthcoming at this appointment than he had been through this entire process. That could have been because I had my mom (an orthopaedic nurse) with me at the appointment. He also explained that none of these are fool-proof. She could be in the casts and still need surgery afterwards.
How am I feeling about this? Devastated. I feel like I failed somehow. No matter how many people say there is nothing I could have done, I still feel like an inept parent. Maybe I didn't have her harness on right. Maybe I could have place her hips out more while she's sleeping. Even Dr. P. said we've done everything we can. But guilt is a nagging feeling that I don't shake easily.
All I can do over the next ten days is make sure her harness is on right and pray to God.