Pre Op Day

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

May 30, 2014
Pre Op Appointment

We left home very early to get to Children's for our 9am pre-op appointment. Not having any restrictions on Addison's (22-mos) eating or drinking made this a fun ride filled with little traffic (thank you HOV) and several rounds of her favorite songs from Frozen. Brother Matthew (almost 3 yrs) happily stayed home with Nana.

Our first appointment was 2 hours of family medical history as well as discussion about Addison's present health.  A new snoopy doll from the nurse as well as a princess castle in the room kept Addison occupied as we answered a zillion family medical history questions. For anyone who knows how last fall was for my dad, I had a lot of ailments to add to the history. Luckily none of them were pertinent to Ms. Addison's upcoming procedure. We are very fortunate as well that Addison's health and growth is all very good. Often scoliosis in infants is indicative of a larger congenital or neurological disorder. We will be required to get an MRI to confirm that neither of these situations are present.  So far Miss A appears to be developing right on time.

The nurse who took the medical history was wonderful and for Addison, the oxygen monitor was more fun than the princess castle. We then met with the anesthesiologist. She was very helpful in calming our fears about long term exposure to anesthesia in toddlers. She also gave us a full description of what "casting day" will look like and what to expect. For me, knowing what's coming up is calming.

2 hours of that...and we are off to Orthopedics. We are greeted by clowns in the lobby. Creepy they may be, but suddenly I do feel a little less anxious about how scary this experience will be for Addison. So far she has scored a Snoopy doll, a pin wheel, and seen countless fish tanks and bubbles. For any 2 year old this was a good day!! We met with Dr. G, the physician's assistant and a PA student about what will happen the day Addison gets her first cast.

Addison is too tired to go for lunch, she was asleep before we got out of the parking garage. A well deserved pinwheel and nap for her brave efforts today. She never cried and I think made everyone she met smile. Goodbye for today Children's, we will see you June 10 for her first cast.

What is going on with Addison????

Some background....

When Addison was 8-months old Mike (her Dad) noticed that her rib cage was not symmetrical. When she sat, she tilted to one side and we could see her ribcage on the right side was protruding. We quickly made an appointment to see the pediatrician.

As much as I love all of the nurses and staff in our pediatricians office, I do want to share that my phone call about this mysterious bump was met with a bit of disbelief. "Babies are still very floppy at this age" was the response to my concerns about my 8-month old not sitting up straight. I am a pretty bold person so I just pushed past the "you're kind of being a neurotic mom" tone and said "well I guess if it's nothing, a quick visit won't hurt anyone". Which she kindly agreed and we went right in. I encourage you to push and advocate for your children if ever met with doubt. There is a lot to be said for parental instinct. And in the case of infantile scoliosis, early detection is the best chance for a non-surgical cure.

Our pediatrician felt and saw the same thing we did and sent us that day for X-rays.  The images confirmed, Addison had a significant to severe right turning 'C' curve in her thoracic spine. Scoliosis usually appears in adolescents and rarely in infants.  The realization that my child has a rare spine disorder known as Early Onset Infantile Scoliosis was devastating. I had so many questions and no patience to wait for answers.

This is where living in/near Boston is truly incredible. We had an appointment with an orthopedic surgeon who specializes in infantile scoliosis within the week. Many families have to travel across several states to a hospital that know how to treat infants with scoliosis. We felt lucky to be so close to Boston Children's Hospital.  Our first x-ray at Children's revealed that the curve was less than initially recorded.  While still significant, it was not severe and met the "watch and wait" category of curves. Addison's curve was 20-degrees. In some instances these smaller curves will self correct. Over the next year we met with the Dr. every other month and took new images, each time revealing no movement. Unfortunately on May 15, 2014 the x-ray revealed that Addison's curve had progressed to 33-degrees and her rib cage was beginning to twist to accommodate the bending spine. It is time to intervene.

The recommended course of action is a series of plaster casts over a 1-year period. Due to her age, the cast will be changed every 2 months under anesthesia to accommodate her quickly growing body. While the cast is on we cannot get it wet, so that means no baths, no pools, beach, etc. It also means we have to watch carefully what falls down the cast so nothing gets stuck and causes a skin irritation. This means, no sand boxes or playgrounds with mulch.  Addison is almost 2 and has an almost 3 year old brother. My head is spinning about how my daughter will live happily in this cast, and if she will fight scoliosis for the rest of her life. The only certainty is that we will be a strong family for her and I know she is getting the best care in the world.

Follow us as we go through this journey with Addison.