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Thursday, March 31, 2011

Not Sure Where This Curve Will Lead Us



My history as a worry wart is firmly established. Need a reminder? Read here.

Obviously, I have been known to worry about problems that never materialized, so this week when I began getting apprehensive, it appeared I had just moved on to a new fear.

On Monday, I took Drew to the pediatrician for what I thought was the beginning of a new ear infection. I was right. Antibiotics, round two. Score one for mommy intuition.

Then, I asked the doctor (not our regular pediatrician, I might add) to look at my newest (old) worry--Drew’s back. While he’s been hitting all his milestones, he often sits with a terrible slouch. Most of the time he leans to one side, and most disturbing, there appears to be a bulging muscle on his left side. None of this, mind you, is so pronounced that you notice on first glance. Most of the time, the boy is moving so fast and pulling up on so many things, you can’t get a good look at him, period.

But, I am his mom. I examine every inch of him. I know him—every scratch, every dimple, every crook and cranny.

Quite honestly, I have always felt Drew, our “little” breech Baby B who lived with his head in my ribs, felt a little funny. Out of 16.5 pounds of baby, his 7.9 lbs was relegated to the cramped upper right parcel of uterine real estate. As a result, he came out a little bruised and bent.

But every time I brought up concerns about his neck or his back, I was told it would get better with time and increasing strength. So we endured more tummy time and engaged in more Drew-cise. Then he started sitting up, crawling, and pulling up. Stop worrying. What could really be wrong with such an active little boy?

Back to the appointment—the doctor stands him up, bends him over, runs her hand down his spine, and in the most un-reassuring way, says it’s hard to tell if his spine is straight or not. Only an x-ray would confirm a curvature, which she didn’t recommend, and if it were scoliosis, which would be rare, they wouldn’t do anything at this point. The bulge? Maybe a muscle. It feels like a muscle. But, “It’s definitely something we want to watch and check again at 12 months.”

Have a nice day.

So, I did what any concerned mother might do. I turned to Dr. Google, and by Tuesday, I was in a complete panic. Infantile scoliosis is rare, and often, very aggressive. Early treatment is crucial in progressive cases. Sometimes, more ominous causes, such as congenital abnormalities and tumors, can cause scoliosis. Scoliosis might mean years of bracing, casts, and painful, dangerous surgeries. Would he ever play sports? How would he play at the beach in a plaster cast? Would kids pick on him? Worse yet, was something malignant causing the lump? My mind (and internet browsing) took me to the darkest, most unimaginable places.

I had to know what was wrong with Drew, and three months was not acceptable.

I would fly to the moon and back. I would sell my body parts. As long as it would help my son, it was a viable option.

What were my options? Wait it out? Call the pediatrician back? Seek out alternative, holistic treatment? Fly him to a world-renowned specialist? Lock myself in a closet and ignore the problem? In times such as these, everyone either has an opinion, or more frustratingly, they don’t have one at all. What I learned is that ultimately, I am his mother, and I sometimes I just have to make the call.

So I called a spine specialist--the best I could find in the area.

He could see us the next day, but first he needed an x-ray of Drew’s spine.
Suddenly, a crooked spine wasn’t my only fear.

Now I worried about the dangers of unnecessary radiation if I was subjecting my son to an x-ray only to satisfy my possibly irrational fears. What if he had this x-ray, and it showed a perfectly straight spine and a perfectly insane mommy?

After prayerful consideration and counsel from wise friends, we decided to go ahead with the x-ray.

Curve confirmed.

Score another one for mother’s intuition. But, at this point, is it really about the score?

Upon a tearful meeting with the doctor, we learned a little more about the curves that may lie ahead for us.

First, the good news is “Drew appears to be neurologically intact.”

He does have early onset scoliosis, but no evidence of congenital changes to bone.

His curve, standing assisted, is 37 degrees, which makes it a “mild-moderate” case, but the doctor says, while there are no guarantees, Drew is quite flexible, and that with time, the curve may improve.

According to the doctor, in the absence of associated disease or pathology, only a very small percentage progress to the point of bracing. I quote, “This is good news as Drew does not appear to have any other pathology associated with the curve.”
Of the small percentage that do progress, bracing would be the next step, and of that even smaller percentage that continue to progress, surgery is an option. Given the advances in modern medicine, scoliosis treatment has come a long way from the days of Judy Bloom’s Deenie and the likes of Forrest Gump-style braces. (Yes, these images have plagued my dreams this week).

The doctor assured me that I had done the absolute best thing for Drew by making the appointment, having the x-ray, and establishing a baseline, objective assessment and diagnosis of the problem.

He wants to see us back in six months for another evaluation where we will hopefully see that the curve has not progressed.

I am sure we have all played the “Would You Rather” game. Like, “Would you rather be poor and good looking or rich and ugly?” or “Would you rather lose your sense of smell or sense of taste?” It’s sort of like that when people say, “Well, it could be worse. At least it’s not__.” In some ways, I know they are right. Scoliosis is not the worst possible thing in the world. Plenty of parents would take that “rather.” But when it comes to my babies, I don’t want to play the “Would You Rather” game at all. I want them to be as perfect as they can be. When you love someone so much that it physically hurts, how can you imagine anything less for them than perfect?

I am still processing all this news. I am continuing to pray and seek wise counsel. I ask all of you who may read this post or hear about our situation to keep us in your thoughts and prayers. I am praying for complete healing. I am praying for wisdom for the doctors. I am praying for discernment as we make decisions about second opinions and other treatment options. I pray for my emotional well-being as I need to be in a grounded place not only for Drew but for Emily, Marty, and even myself. I am praying for what I know and what I don’t know.

I realize “having a child is to decide forever to have your heart go walking around outside your body.” With all that I am, I pray for the piece of my heart named Andrew Elliott.

8 comments:

Diana said...

Melissa,

I have you, Drew, and the whole crew in my thoughts. I think you did what any good mother would do. I hope you get the answers to your prayers answered and that Drew gets the help and healing he needs.

Diana

Sherrie Moore said...

Melissa - I thank you so much for writing about Drew's condition. I want to share this with you because I know you are a Christian with God in your heart: He brought you here and He will lead you through this. Trust in the Lord and love Him with all of your heart and soul. Drew is going to be fine.
You were given an extra dose of mom-intuition for a genuine purpose ... to look after your beautiful babies. And you were also granted an appointment with a specialist in record time and he's going to follow Drew. These were all God things !
You are a wonderful mom and I love that I know you. Take good care of your babies, yourself and Marty.
Sherrie

Beth said...

Mostly, I wanted to say, "Good job Mommy!" You know your son. You know when something is just not right. Good job not sitting back and waiting. You are your kids' primary advocate and when you know something is going on, you definitely did the right thing by taking the next step.

I will keep Drew and your whole family in my prayers. People will tell you that scoliosis is "not so bad." But when it is your son, your precious baby, it is a big deal. I completely understand that.

Keep fighting for your little guy and keep praying for guidance. Please keep us updated on how he is doing.

Holly Ann said...

You are doing a wonderful job, Momma! I truly desire that all you are praying for comes to pass.
For what it's worth, I have scoliosis. Interestingly, my curve was also 37 degrees when first discovered. However, I was 16 at the time so it is a very different situation in that regard. I wore a brace for a while in HS. Was it fun? No. Was it the end of the world? Certainly not. My curve did not progress and I was able to stop using the brace after a fairly short time. The only complication I've ever really dealt with came during labor & delivery, which, of course, should not be a problem for Drew! :)

Jenner said...

You are an amazing mother. It truly astounds me how others can take "I don't know" or "Wait it out" as an answer when it comes to their child's health. You should be very proud of yourself that you did absolutely everything right by Drew. My thoughts are with you and your family. Please keep us updated.

Tasha said...

Melissa,
A mother's gut feeling is always right.....at least it has been for me so far. Thank you so much for visiting my blog. I am so happy to have found yours. I look forward to reading more about Drew and his sweet sister.
As a mom who has been going through this roller coaster of a ride with Progressive Infantile Scoliosis since 2006 I would greatly suggest you seek a doctor who is "highly" trained in treating babies/children with this condition. A 2nd opinion is always a good thing. And please feel free to reach out to me or the CAST support group. You are doing a GREAT job of it already! I can't wait to learn about you and your family through your blog! Hope y'all have a great weekend!

Shannon @ Lifelong Impressions said...

Good for you! You did exactly what you should have by questioning and exploring other options. I always try to remember that doctors practice medicine and do not know everything. They, like us, are human with normal reactions, prejudices and memories.

I hope you will be able to navigate this road ahead with all the spiritual guidance possible. Love ya, girl!

Mary said...

Oh my! I'm just now getting caught up with this! I'm so sorry. I think the whole "it could be worse" thing is something a mean person came up with! That statement never makes me feel better. You have every right to grieve and mourn and be sad about what your son might have to go through. I'm so glad to have you as one of my "blogging buddies" - please know that you are in my thoughts and prayers!

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