Our New Normal – Part 1

I write letters to Ellen DeGeneres. No particular reason. Just because I can.

Dear Ellen,

This post has been in the works for sometime now. I delayed writing it because I didn’t want any of this to be true. No parent would. But effective yesterday, it’s an inescapable truth. Our 17 month old has scoliosis. I realize it’s not as scary as some medical conditions can be, but this is a whole new world for us. Here’s the breakdown of her how her diagnosis was made. 

Her one month appointment:

(If you don’t have kids, babies are seen at 1 month, 2 months, 4 months, 6 months, 9 months, and 12 months – during their first year of life.)

The pediatrician noticed that she had very tight muscles in her neck. He diagnosed her with torticollis – a very common condition that with a little physical therapy can be corrected. He referred us to a physical therapist. Two weeks later we met with the physical therapist. When he was examining her, he noticed a curve in her spine and told me to bring this to the pediatrician’s attention.

2 months:

The pediatrican confirmed it was scoliosis but at her very young age, it would probably correct itself. He told us he’d keep any eye on it at her upcoming appointments. At this time, I was bouncing back and forth between two pediatricians because I couldn’t make up my mind for which one I liked better. Pediatrician #1 was the doctor who first diagnosed the scoliosis.

4 months:

This time I saw pediatrician #2 who hemmed and hawed over whether or not she should be sent for a referral to a pediatric orthopaedic doctor. He told me he wanted to run it by some of his colleagues. His concern was that he was jumping the gun in sending her for a referral because as pediatrician #1 told us, scoliosis can correct itself. He told me he would call me in a couple of days and let me know.

One week later, I’m calling him and leaving him a message because he never called me back. I don’t like it when doctors say they will call you back and then don’t. I turn into a highly annoying person when this happens.

Two weeks later.

I make an appointment for the baby to have her weight checked because I was breastfeeding and it’s anyone’s guess as to how much breast milk an infant is getting.  I made the appointment with pediatrician #2, planning on backing him into a corner and making him give me an answer. If you’re not aware of this, it can take months to get into a specialist, that’s why I was anxious to find out if she needed a referral.

During the appointment he apologized for not returning my call and told me that he felt it was premature to send her for a referral. Okay. Fine. I was good with that.

6 months:

This time pediatrician #1 saw her. At this time, he told me he was concerned about the curve in her spine and he was going to put in for a referral.

When my husband returned home from work, I told him about the referral. He stood in our living room, staring off into space.

“Are you okay?”

“Yeah,” he said. “I’m just wondering why this is the first time I’m being told about the curve in her spine.”

My reaction:

 

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Ellen, let me make something very clear. Every evening when my husband returns home from work, I tell him about each child, what they did, what they said, and what they ate. I tell him about the baby. How long she slept. How many times she pooped. The color of the poop. The consistency of the poop. The color of my nipples after she’s done nursing.

 

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There was no way I didn’t tell him about the scoliosis, how it was discovered, or how many doctor’s appointments got us to this point.

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But since slapping him upside the head would be inappropriate and unproductive, I ran him through the timeline. Again. Starting from her one month appointment.

A few months later we’re at our second appointment with the specialist who tells us that we’re in a holding pattern with her scoliosis. There was no significant change between her first set of x-rays taken in November and her second set of x-rays taken the first week of January. It’s too early to tell if she’ll need medical intervention – a cast or a brace. Protocol dictates that we have a third set of x-rays taken in six months to see where she’s at with the curve in her spine. That means we’ll be in Augusta, GA when she needs those x-rays.

Within a week, Baby Girl had an appointment with a specialist in Georgia for the following summer. Six weeks before we moved, I requested all the medical records and x-rays be sent to the hospital in Georgia. 

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That brings us to this past summer. Augusta isn’t a small town, but it’s not exactly large either. When researching the hospital there, I was relieved to learn that there were surgeons there who could place a cast on her if that was needed. I feared that the hospital in Augusta would send us to Atlanta. Not that I have anything against Atlanta, but one of my many quirks is anxiety when having to drive into large, unfamiliar cities. It’s not a debilitating anxiety. I don’t require medications for it, but it is very stressful for me, even with a GPS to guide me there and back. My blood pressure increases, I’m short-tempered, and really anxious. It was a huge relief to know that the hospital in Augusta could take care of all of our needs.

I took her to the appointment where they ordered another set of x-rays. Here’s a little tip: Position is very important. When baby girl was x-rayed in Maryland, she was lying on her back. When they x-rayed her in Georgia, she was sitting up. Here’s another tip. Always hand deliver x-rays to the hospital. The hospital in Maryland never sent the x-rays to the hospital in Georgia (even though I specifically requested them.) They did send her chart so there was at least something for the doctor in Georgia to look at. According to the notes, baby girl had a 30% curvature in her spine in January. According to the x-rays taken in Georgia, she now had a 61% curvature in her spine.

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The doctor said some of that curvature was because of the difference in how she was positioned for the two sets of x-rays (on her back for one, sitting up for the other.) But it was still a significant change and cause for concern.

“We’ll need to run a few more tests,” the doctor said.

Words no one ever wants to hear.