Cast Off Time!

TOMORROW!

The six weeks are up and tomorrow Melody gets her cast off.  I am more excited than anyone.  Even Melody is pretty nonchalant about the whole thing.

But, the reality is that now the real work begins.  The six weeks in a spica cast have been relatively easy, for Melody.  She has had to have most things done for her and she is fine with that.  But now, that will change dramatically.

Before surgery I gave the following list of hopes and prayers:

  * After surgery we would see a great improvement in Melody's scoliosis

  * After surgery Melody will be able to walk with less bracing than she currently uses

  * No complications during surgery

  * Pain levels would be manageable

  * Wisdom in navigating 6 weeks in a spica cast

  * Peace for Mom and Dad, especially during surgery. 

The last four of those have answers!
 - no complications during surgery.... other than it was very long
 - pain levels were awesome... she hardly complained of pain at all
 - we've made it through spica cast life
 - overall we've felt pretty peaceful about the whole thing.. the last 3 hours of surgery and not hearing     updates from surgery was trying, but that is behind us now.

Continue to pray about the first two.  Tomorrow the cast will come off and x-rays will be taken.  I'm not sure if we'll know how the surgery has affected her scoliosis until much later, however.  We will discuss with the doctor what Melody is released to do and contact her physical therapist to get started.  We hope to at least be cleared to work significantly on range of motion exercises.  Her legs are going to want to stay in the position they've been in. We expect to have to get fitted for new braces and all the many fittings that accompany that.

We would add to the list of prayer:
* pain levels would stay low - I'm concerned she might have more discomfort when the cast is no longer protecting her and she actually has to move her legs.
* Melody would have a positive attitude and determination as she tackles physical therapy.  It wouldn't hurt for Mom to have healthy doses of those as well.

Thanks for all your love, prayers and encouragement along this journey.  We have a wonderful support team.

Hip Surgery Musings

Will she be able to do this after surgery? 

It's amazing how time flies.  Glancing at my blog and realizing it's been 2 years since I last wrote is another reminder of that.  

It's also a reminder of how "normal" life has become.  And, maybe, an indication of how crazy busy it can be, also.  

Tomorrow Melody goes in for a rather large surgery.  Tomorrow life will be anything but "normal" and the recovery from the surgery is predicted to be long and will definitely include new routines. 

We have known for some time that Melody has scoliosis.  Her doctors have been watching it and we have seen the degree of curve increase fairly rapidly over the past couple years.  They've mentioned a back brace "24/7 until she is 16!"  We were surprised, however, when last fall her doctor said he thought the scoliosis was being aggravated by her hip displacement.  The orthopedic surgeon agreed and we found ourselves talking surgery.  

This is a departure from what we had been told about spina bifida and hips.  Most often the hips are simply left out of place, especially if the person isn't likely to walk anyway.  Surgery tends to be futile as the hips don't stay without the muscle structure to keep them there.  

 

They don't do this surgery after age 8, and since Melody is currently 8, time became a factor.

So... here we are in January headed to surgery.  The surgeon plans to create hip sockets and place both hips in a more typical position, straighten a shin bone, and release a tendon that is preventing her from standing erect.  This is a lot, but since recovery is 6 weeks in a spica cast plus physical therapy, the theory is to do one comprehensive surgery and recover once rather than many small surgeries with multiple recoveries.  

So, as we go into surgery, here is a list of our hopes and prayers:

  * After surgery we would see a great improvement in Melody's scoliosis

  * After surgery Melody will be able to walk with less bracing than she currently uses

  * No complications during surgery

  * Pain levels would be manageable

  * Wisdom in navigating 6 weeks in a spica cast

  * Peace for Mom and Dad, especially during surgery. 

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!

Doctor Visits

Tomorrow and Thursday we will be visiting the doctors. Wednesday Melody has Spina Bifida clinic. We will see the usual doctors (pediatrician, neurologist, urologist) as well as the Pediatric Orthopedic. As Melody is now 9 months old, they'll be doing a full assessment of her leg function and make physical therapy plans. We should also learn more about her hip and have lots of questions we hope to have answered as well.

Pray for this visit. I am anxious about it. I think I know Melody pretty well and her abilities as well as areas to work on. However, often the doctors reveal something new and it is sometimes hard to take. Kevin will be going with us to help process all we learn as well as ask questions.

Thursday is Hannah's follow up with the ENT. The redness is gone from her neck, so I know the infection is better. However, there is still a sizeable pocket of fluid where the cyst was. He had only discussed draining it if it grew, which it has not. She has 3 more days of antibiotics. So, we'll see what the doctor says then.

I'll try to post updates, but it may be a few days as life is busy until Friday.

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.