Settling in to the new normal.

For more background information, please see: What is going on with Addison?

August 8, 2014

Our new normal comes with a list of new ways to live life. Just to be clear, none of this is a complaint. I am forever grateful that there is a treatment available to Addison that could make a significant difference as she battles scoliosis. Also, my goal for this blog is to not only share our experiences with friends and family but to hopefully help some other mom and dad out there who may be frantically searching the internet for answers of how their child will live in a cast for 12 months. 

We have all adjusted to the new normal; bibs are in and sand and water is out.  The summer of little outdoor play hasn’t been easy to be honest. Addison has an older brother who is just 3 and full of energy.  It’s a challenge. They both ask to go outside all day long but overheating and skin rashes are real concerns. We have come up with some ways we can be outdoors and keep Addison cool but when it’s 80 degrees and 80% humidity, it’s just not the day to be out there. At times I find myself hoping this year flies by.  However children are this small for such a short period of time it seems counterintuitive to wish it away.

Keeping the cast dry and clean

Bibs: The daunting task of keeping a toddler dry and clean seems futile. Nothing can fall into the cast due to the risk of skin irritation (imagine crumbs rubbing against your skin for 2 months). We have had a few close calls with some large cups of water left in reaching distance but like I said, the new normal is becoming second nature. Addison has a bib on for just about everything from eating to bathing.  At the recommendation of another mother, we tried Bumkins bibs and art smocks. We prefer the art smocks. They have sleeves and tie in the back giving a little extra coverage (and piece of mind) that the cast is protected.  They are available on amazon.com and bumkins.com.

Play: A cool, no sand or swim summer is a downer for all but especially difficult when you live in a beach community. We are definitely not the popular pick for play dates on sunny days. Summer days are typically too hot for Addison to be outside for very long. During one particularly long stretch of humid days in the 80’s, even I was sad and stir crazy in the house. Enter creativity out of desperation, ice in the water table! I pulled the plug so the water drained as it melted, and by the time they were bored the ice was gone.  We have become regulars at the Children’s Museum, found a few indoor play spaces and playgrounds that are sand free. One has mulch but we will make that work until I find mulch down her shirt.

What is ‘fun’ and ‘play’ has been redefined.  Too much TV time is definitely a danger. I’ve hunted down all kinds of tchotchkes to pull out when we have been stuck in the house for too many days.  Simple, small toys can break up a long afternoon; mini slinkys, wind up Nemos, and anything ‘Frozen’ brings smiles. I’ve had to become crafty and look up ideas on Pinterest (this is SOOO not me). Would you ever let 2 toddlers loose on a bunch of jello jiggler shapes in your kitchen?  It’s a mess! However very fun, edible and clean up is easier than it looks. We go grocery shopping ‘for fun’ and play a version of eye spy as we make our way around filling the cart. We talk about the color, shape and quantity of everything in the cart. People at Stop & Shop must think I’ve lost it, and in that moment I know that I have. But we’ve used up the afternoon staying cool and not sitting in front of the TV.

Bath time: Bath time for kids is fun. There are toys, bubbles, water and splashing is encouraged. They loved the tub! 

We are in the new normal now. Baths are solo, and carefully executed in the kitchen sink. Our first day home in the cast, I gathered what we would need: bib, large beach towel, oversized bath sponge for cushioning, a cup to rinse the soap out of her hair and of course, Nemo and Dory. I happened to grab a hot pink beach towel and the sponge we found is in the shape of a turtle. Addison’s reaction to the set up “Pink! So pretty”, we got her up onto the counter and showed her where she would lay down, “Turtle! Cute!”  Apparently the only people worried about all of this change are the adults, because Ms. Addison is just fine with the new accommodations. After her hair, Addison stands in the sink to have the rest of her body washed. The cast and t-shirt remain on, so we do the best we can without getting them wet.

We use a child sized hairdresser smock for bath time. They wrap all the way around the cast (unlike regular bibs) and fasten tight at the neck which protects from drips.  The oversized bath sponge is available at Babies R Us and the smock can be found at any beauty supply store.

Normal things still happen
Addison turned 2 and Matthew turned 3!

The reality of the new normal*

While there is a lot of focus on the cast because it is the most intrusive, the real issue lurks inside of it, Addison’s curving spine. Our new reality is, we do not know if this cast will cure her as we still do not know why it is happening. The first cast comes off this Friday.  Before we head home we will go to radiology for a spinal MRI. This will be done under sedation. The MRI will check to see if her spine is structurally normal, if her spinal cord is somehow compromised and if there are any vertebral malformations.

Most cases of scoliosis are considered idiopathic and occur during childhood without a clear cause. This is what we hope for as a diagnosis. 

A small number of children develop a lateral curvature of the spine even before birth, during the period of fetal growth in the womb. These cases are referred to as congenital scoliosis, which means that abnormal development is the cause of the condition. Congenital scoliosis occurs when bony portions of the spine fail to form properly or normally separated segments fuse together during fetal development.  This is a concern to us because chest x-rays were taken of Addison’s lungs when she was 4 months old to check for reflux issues. An approximate 20-degree curve can be seen on that film. At 22 months, Addison’s curve had progressed to 33-degrees which is when we cast her. This curve is significant however not as severe as many children who have curves of 60+ degrees by this age. Treatment for this type of scoliosis can involve surgery and metal rods placed around her spine.

Another major type of scoliosis is neuromuscular scoliosis, which means that it is caused by the presence of a neurological or muscular disease, such as cerebral palsy or muscular dystrophy. Although we have not seen any evidence of these or other neuromuscular disorders, there is such a wide variety of these types of diseases that may cause neuromuscular scoliosis. The clinical presentation and severity of these conditions is extremely variable. Treatment for neuromuscular scoliosis is unpredictable since you are also treating a neuromuscular disease.

*This information as well as further definition can be found at www.childrensorthopaedics.com/Scoliosis.htm

For now there is no reason not to be positive. We have concerns, but we wouldn't be parents without them. Today, I am grateful for Boston Children's Hospital and for a sunny forecast for our weekend out of the cast.

Thanks to all for reading about Addison's curve and following us along our journey.

xo