Encouraged and Disheartened

Today was our pre-op appointment for Georgia's cast change this Friday.

The great news is that means we only have 3 1/2 weeks left of casting! When this whole thing started I didn't think that we would ever get this far. It felt like forever away. But here we are, six week into the casting. The worst of it is over and now we can just ride it out until Friday the 14th when her cast comes off in the doctors office.

On Friday the day will go much like her initial casting day. We check into the hospital at 6:00 am and she will go back into the OR at 7:30. They will play with her then put her to sleep with some gas in a face mask and once she is under they will put in her IV. She will get a bath and all lotioned up, a physical exam of her hips and an ex-ray then her new and final cast. Which will be a new color! We have agreed to go with Moms Choice then Dad's Choice on the casting color. The biggest difference in the day will be that we will not have to be admitted to the Peds Unit. We will only have to be in the same day surgery peds unit and could be out of there as early as noon.

This time around it is much easier because we know what the outcome will be. There is a small, small chance that they will find that the casting isn't working and we will have to plan for surgery at that time. The Dr does not think that will happen, but does have to admit that he sees it once in awhile.

All in all this is very encouraging.

The problem is I find myself disheartened at nearly every hip appointment for one reason or another. Going in so excited for this one, since it means the final stretch of casting I didn't expect to come out feeling troubled. But, again, I did.

We talked about what comes next. And what comes next is another brace, the actual name of which I don't know yet. It will be much easier than the cast and even easier and less awkward than the Pavlik Harness, I believe. It will wrap around her waist and each thigh and have a bar in the middle to keep her hips in place. We have known about this brace since the beginning. What I didn't know was how long she will be in it. I knew it would be "several months" which I took to mean about 3 stepping down the time she would spend in it rather quickly. In reality she will be in this brace for at least 6 months, probably longer.

I feel like so much of her babyhood is just taken from me. I have no idea when she's going to learn to roll over or sit up or crawl and how she does any of this in her new brace. All I know is that she has to wear it until she walks then maybe still nights and naps. I don't care that I will have these opportunities with other children we plan on having either, this is her one and only first year and we have to spend the whole thing in harnesses, braces and casts. She will also have regular check ups until she is 5 and then a follow up when she is 10. Each exam presents another opportunity for bad news, for her hips to show that they are not developing properly and for us to hear she needs surgery.

The fact that this has been caught early and is being treated while she is so young is very positive and reduces the chances that she will have any further trouble. It is harder on my heart that I ever thought it would be to have to go in to every appointment and hear that we don't know when this is going to be over.

I understand very, very well that I could be dealing with something more serious like a brain or a heart. Or that I could be in a situation where my child could have been diagnosed with something terminal or something incurable and suffer her whole life with a disability. Still, this is what I have on my plate.

This is my situation with my daughter and this is what is breaking my heart today.

Georgia, on the other hand, is sleeping it off in pure sweetness.

Still going

I now understand why every other Spica Cast blog I have found is only half complete. You spend so much time taking care of this stinking cast that you don't have the time to document it. Here's why:

-You have to change your baby at least twice as much as another baby without the cast.
-If your baby has a blowout or a leak up either the front or the back it will take you 45 minutes to an hour for one diaper change.
-Its the saddest part of my day when I have to use the hair dryer on her cast, since the only sound that scares her is the hair dryer.
-If she spits up on her cast you have to cover it with baking powder as soon as you can to keep your baby from smelling like rotten milk
- Its a strange thing lay your baby on the ground and cover her in Antimicrobial Fabreeze, but it works
-Its a huge advantage to have little hands while caring for the spica cast because I can reach way up and way down into the cast to keep her skin from burning or breaking out.
-Once the cast cotton is dirty or wet you have to pull it out very carefully. You don't want to make creases in the remaining cotton that could cause sores on your babies skin. Then you replace that cotton with Always pads. Its very weird to buy a pack of pads for your 5 month old daughter! I was suppossed to get to wait until sometime in her teen years for that shopping trip.
- You become profitent and rigging everything in your house to work with a cast. The high chair, the stroller, the toys ect. It is a great opportunity for creative problem solving!

Here is our home made Spica Cast approved play station.


Georgia is doing very very well in her cast. She doesn't mind it all these days and the shape of the cast fits perfectly on my hip. We get a cast change in two weeks in the OR where she will need to be put under full anesthesia again. It should be a easier day and a shorter procedure.

We are right at the half way point. We've made it this far, we are going to be able to make it all the way.


Georgia and her cousin celebrating Easter in a Spica Cast.