An unexpected turn in our hip journey

For those of you that know me, or have followed my blog in the past, you know that one of the reasons I started a blog was to chronicle our hip dysplasia journey.  I have blogged about many other things, but hip dysplasia was one of the biggest.  There were very few resources out there when we were going through this, so I started blogging about what was going on.

Here's a quick recap - Madison was born with hip dysplasia that wasn't caught until she turned one year old and started walking with a limp.  It was a rather severe case that required surgery which meant a spica cast.  If you aren't familiar with them - it's a cast that goes from armpits to toes.

After two casts she went into a brace.  This kept her legs out at her sides to allow the femoral head to push into the hip socket allowing it curve over the bone instead of being flat.  (she basically had no hip socket - just flat bone.)  

Once she came out of the brace, she would have regular checkup with her orthopedic surgeon to x-ray the progress of the hip.  At first everything was moving as it should.  And then it stopped.  For no reason.  And now it has even started going the other way - more flat, not rounded.  

That means we now do it all over again.  

In late June Madison will undergo another surgery.  She will be in another spica cast for 4 to 6 weeks.  Which isn't horrible compared to the first time.  At 4 weeks, she got a cast change and was in it for another 4 weeks.

(cast #2 was purple)

  After the cast comes off, she will walk with a limp b/c her leg lengths will be different.  The affected leg has already grown longer than the unaffected one.  
So the surgeon will first shorten the affected leg by removing a piece of bone. That bone will then be used to try to make a hip socket.  Her leg will be shorter for a while, but will eventually catch up and the limp will go away.  

It's a 3 hour surgery, and will be the longest 3-4 hours of my life with the exception of her first surgery - the longest 4 hours of my life.

One of the biggest changes this time is Madison is 5 years old, not 1.  She is more aware of what's going on.  She knows what she will be missing by being in a cast.  She knows she will be different from other kids her age.  We've been talking about what she can expect, and she has already said she doesn't want to be in a wheelchair, and she doesn't want to be in a cast.  I am trying to stay positive ("it will only be a few weeks." " you can pick what color cast you get!"), but at the same time being honest ("yes, it's going to be different.  You won't be able to do some things, but we will find other things to do.")

Another big complication is I am 27 weeks pregnant.  I have a baby coming in August.  I will have to deal with a child in a spica cast, while being in the final stages of pregnancy.   This could get interesting...

She will get a wheelchair this time, which will help tremendously.  Last time she fit in a stroller, so a wheelchair wasn't needed. 

I will be looking into car seat options soon.  I'm sure we will have to borrow a special car seat like we did last time.  Thankfully there's an organization that loans out special needs car seats for free.

I assume this also means Madison will have a plate in her leg again, so in a couple of years there will be another surgery to remove the plate.  

I can't tell you how disappointed, overwhelmed, and sad I am over all of this. I really thought we were coming to the end of hip journey.  Now it feels like going back to the starting line.  

We appreciate all your prayers for us as we go through this difficult summer.

The "hip" journey begins

Madison's surgery was Monday morning at 7:45am. I was strong for Madison, but once they took her from me, and they walked down the hall, I started crying. The nurse walking me to the waiting room said some thing like "Are you ok?" But I couldn't even answer. They just took my precious baby off to surgery! Of course I'm not ok. A woman walking by gave me a hug and said "God will take care of her." I made my way to the waiting room and cried some more. Our pastor and my parents were with me the whole time. Chris stayed with the other kids to get them to school and such. After 4 hours the surgeon came out to tell us all was good. Until that moment I had been sick to my stomach. Once he said all was well, I wasn't sick anymore, and actually felt hungry. He told us he did the open reduction on the left side, and also had to do a femoral osteotomy (cut her bone and turn it, then re-attach it w/ a plate and 4 screws).

She was very groggy and out of it all day Monday and most of Tuesday. We came home yesterday afternoon. I wasn't ready to come home, but apparently Madison was. Last night she finally asked for juice. I think that was the first thing she'd said since before surgery. She has a bright pink cast from arm pits to toes. So far, it's not bothering her. But she's only today starting to get back to herself. I'm sure tomorrow it's going to hit her that she can't move and she's going to be one angry baby girl! So far we are adapting. I'm getting creative around the house to accommodate her. We had to get a special car seat made for babies in spica casts. But I've tried our stroller and it will work. I've adapted the high chair to work. She finally had a poop, and we managed to get it clean without getting any on the cast. Yay!! She will have a cast change in 6 weeks, then 5-6 more weeks until we are cast free. Then we start on a brace. The better she heals the less time in a brace, so that's my biggest prayer right now - quick healing! Otherwise, it could be up to 24 months in a brace. Can you imagine her being in a brace for 2 year!!! I can't!

So that's the quick version of what's been going on this week. I'll update more as things go along.