Hip Hip HOORAY!!!

Melody no longer needs her hip brace!!!! Her hip is in place. I can't tell you how exciting this is. I was shocked as this was not the news I was expecting. We were just sure that barring a miracle we would be deciding whether to try hip surgery or not.

I cried tears of joy as I drove home. Life with spina bifida means many disappointments and staying positive when you want to weep for your child and the challenges they face. But, some days you get to weep tears, not of sorrow, but of extreme joy. For, on days like today, God grants you a miracle.

I really like the Ortho doctor that we saw this morning. He added a whole day to his week to accomodate all the patients of the doctor who moved.

He spent a few minutes getting up to speed on Melody's hip and then sent us for x-rays of her hip. After returning from x-ray he examined her hip for a few moments and then said he needed to go look at her x-ray again. When he returned to the room he said she didn't need the brace anymore. That her hip is in the socket!

I'm so thankful we got to see him as early as we did. Melody's legs are already kind of stuck in the position the brace held them. The doctor said to keep them there when they no longer need to be would just make that problem worse. So, now we get to begin training her legs to go into a more "normal" position.

We will return to see the Ortho in 4 months. It is possible that Melody's hip will move out of the socket again. The Dr. said not to worry, it would not be something we do, but would be a result of the spina bifida. I was told to keep her brace as she will go back into it if needed. We will be praying that will not be necessary.

The Dr. also gave her the PT release as well as a referral for PT. I'll be following up with that as soon as her nurse case worker returns from vacation on Tuesday.

Melody was also given a RX for AFO's (ankle foot orthodics). She will need to be fitted for those soon as well.

I'm so excited. She can wear ANY type of clothing for a little bit until the AFO's dictate more of her wardrobe. We are already planning to buy her a pair of jeans and a float for the pool. Can't wait to put her in her supersaucer and change her car seat back. Diaper changes have become much easier and she is so much lighter. My back, neck and shoulders are grateful already. But the best part is cuddling her without the brace in the way.

What a wonderful day!

Hip Abduction Helpful Hints

Several months ago Melody's doctor prescribed the "pavlik harness" for Melody's unstable hip and we've since moved up to the "rhino cruiser." Having a child in a hip abduction brace is a challenging adventure. One of my biggest frustrations has been the lack of help given when we left the doctor. I have had to come home and figure things out. The internet has been the greatest source of help when a few Moms have shared their tips.



So, to add to the motherly advice in cyberspace, here is a list of tips I've complied:



1) The week your child is in a new brace will be difficult. There are the emotional adjustments as well as the practical ones, like figuring out a whole new wardrobe. Give yourself time to adjust.



2) Once you've adjusted, what seemed overwhelming will soon become routine.



3) No matter how routine dealing with the brace becomes, there will be difficult and emotional moments. It just isn't easy or "normal." Ever.



4) Baby Gear is another difficulty. Finding things that accomodate your child's legs sticking straight out is difficult. Here are some of the things we've found that work:

- Macleran Techno XLR - I love this stroller and it accomodates Melody's brace perfectly. I really can't say enough good things about this one.

- High Chair - Chicco - the only one we could find without sides. The arms go up and down, so I put her in and then lower the arms over her legs. It works very well.

- Car seats have been our nemisis. We are using the Eddie Bauer Deluxe 3-in-1. It accomodates Melody's legs and is rear facing as well as converts to forward facing and then a booster. Those are really the only good points I have found so far. It was less expensive than other options and was available immediately when we needed it, so that is what we have been using.



5) Leg warmers - they are easily obtained on ebay for $2-4/pair. The are wonderful with the Pavlik harness and I could change diapers without having to remove the harness.

6) The rhino cruiser makes Melody very hot so we've been dealing with heat rash and eczema. I've found a light pair of leg warmers and a onesie are about all she can comforably wear. I leave off her socks and shoes as it allows her to stay cooler.

I'm sure this is not the last post, but those are my tips for now.

Melody's New Brace

Yesterday Melody traded in her Pavlik Harness for a Rhino Cruiser Hip Abduction brace. The Pavlik was not working, so she has moved on to the next option for her unstable hip. Once again, we are praying this will solve the issue.

As with anything new, this brace is taking some getting used to. The biggest hurdle is that she can no longer ride in her infant car seat with it. The doctor wants her to wear it "full time," so that is obviously an issue. The orthodics provider which fitted her with the brace was of no help whatsoever as far as the carseat. "I can't legally advise you to have her wear it in a carseat!" I spent the afternoon on-line doing research and then last night Kevin and I were off to the store to attempt to find a seat that works. They make a special one that sells for $500, so we were trying to avoid that. We did find one and brought it home. Yesterday I had to take Melody's brace on and off each time we got in and out of the van.

Today I have spent much of the day trying to install the car seat and get it to work with Melody's brace. A rolled up towel and t-shirt and a removed base, and I currently have it working, However, the driver's seat in the van is forward almost as far as it will go. This works okay for me, but means that Daddy will never be able to drive Melody anywhere. Obviously, my work is yet finished.

The carseat issue seems to be the biggest hurdle. Melody is able to sleep on her stomach in this brace, and has been sleeping normally, so that is a HUGE praise. I have to take it all off to change diapers, but it is only 3 velcro straps, so not too bad. It takes about 10 minutes each time.

The brace has two straps that go around her thighs and one that goes around her belly. It appears that wearing onesies is the best choice to keep it from irritating her belly.

The brace is very hard, so it a bit uncomforable while she is sitting on my lap, and is very slippery. It is heavy and awkward to manuver her in it, but it does have a pretty good "handle" in a couple of places.

Here's her cute caboose!

I am having fun putting her in outfits she hasn't been able to wear for months. Last night she actually wore a sleeper to bed and I'm giddy about her wearing pants and shoes! I'll be shopping for legging with longer shirts and dresses to go over them. Bulky pants aren't very good under the brace as they bunch up.

I must admit the last couple of days have been a challenge. I wish it were easier. However, life will never be easy for Melody. So many things will pose problems and we'll have to find ways to "make it work." As much as I want to scream and chew out car seat manufacturers and orthodics providers, I need to face the facts. I need to approach each new challenge with a "we'll find a way to make this work" attitude. Melody and I are going to need that. As well as passels of creativity. Oh, and a boatload of humor wouldn't hurt, either.