Monday, August 05, 2013

Sophie has scoliosis (151.8)

Sophie had her back to school physical last Friday.  They discovered she has scoliosis. It's in her upper back, looks like it's probably a C curve.

It runs in Mark's family. Our niece, Kelly (who got married last year in Colorado) had scoliosis and had to have surgery in her late teens. It was very serious and I remember how concerned my brother in law was about her. (She looks perfect now, so the surgery obviously worked.) And our nephew, Corey, had something wrong with his spine (not sure it was scoliosis, probably was) and had to have a rod put in his spine to keep it straight. Mark's aunt (his mom's sister) had it so bad that her hips were very crooked. She had to have all her skirts altered so they would hang in a straight line (I remember his cousins talking about this after she died and they were going through her clothes).

I am a wreck.

I feel guilty because it's very pronounced and it's hard for me to accept that I didn't catch it earlier.  I have noticed a slight bump on her back before, but it's never been pronounced and I didn't think anything of it. So now, of course, I feel like I should have thought something of it and am beating my head against a wall at my stupidity.  

Her hair is very long, almost to her waist, and she almost always wears it down.  And she's 12--it's not like I inspect her body on a regular basis like I did when she was little.  She doesn't have any physical side affects yet, no pain or anything.  I can rationalize all these reasons for why I missed it, but I still feel tied up in knots with guilt.

I am filled with fear.  This isn't reversible, to my knowledge and from what I've briefly read online.  It can get worse. Corrective measures include wearing a brace, surgery, maybe some physical therapy.  She'll need regular x-rays to watch the progression. 

This is the child who has had "something wrong with her" since she was 2 1/2.  She already feels limited by her vertigo and migraines, and has emotional scars from all she missed out on because of her extended vertigo spells and from what she misses out on now.  She has almost no arch in her feet and her feet/heels are very narrow; she has problems finding shoes that fit and any time she runs (like on the playground), she feels like she looks weird and her friends have commented on it.

After it was pointed out to me, now it's all I can see when I look at her back. Her right shoulder blade is noticably humped. Her right shoulder is slightly higher than the other. This is such a tough age when it comes to insecurity around physical appearance, and I'm worried about if this will make it worse.

I don't know how to handle all this. She goes to see her doctor next Tuesday. I had her physical done at the Walmart clinic for $30 because her insurance doesn't pay for well care visits. There will be follow ups and specialists involved, which she has already suffered through most of her life because of her vertigo.

I don't know how to help her feel okay about all this because *I* don't feel okay about it. I am terrified I will handle it wrong and really screw her up.

I'm praying. I'm talking to my sponsor today. I don't want to read too much online because I'm afraid I'll read horror stories and make myself more afraid.

I need to talk to my therapist. I have no idea where the money for that is going to come from.

I am a big ball of worry and fear.

She isn't limited physically by it, at least anymore than she was limited before and at least not yet. She isn't obsessing about how she looks, which I hope is a good sign.

It's probably going to be a long road. I have to get it right. And this will all happen during a time when I'm already afraid I won't be a good enough parent during her teen years.

I know that, ultimately, everything will be okay. She's still a beautiful, talented, kind, compassionate, funny, and loving girl, and above all, I don't want this scoliosis to damage any of that. I feel a heavy burden to make sure of it.


Laura N said...

side note--is anyone else having trouble posting in compose mode in blogger? I can't get my cursor to show up in the post area. I have to write in HTML or send an email.

Jill said...

Relax and breathe!!!

Scoliosis is so common - this isn't something she will die from or something that is going to limit her for a lifetime. If YOU make it a big deal, she'll make it a big deal, so do whatever you have to do to minimize your anxiety about it because even if you SAY nothing, your body language will say it for you.

Think of it like getting braces for her teeth - if she has crooked teeth, you get them fixed, no big deal. Same with the scoliosis - you do what you need to do to take care of it, no big deal. Even if that means surgery - sometimes surgery is needed for orthodontia as well.

She will be fine. SHE WILL BE FINE.

Now breathe!!! :)

Laura N said...

Jill, thank you. This is why I write and why I'm so thankful for my blog friends. I need your perspective. I have to get the fears out of my head, shine the light on them, and then they dissipate. I *know* all you said is true, and needed to hear it.

Jill said...

Love you, sweet friend! :)

Vickie said...

I don't think it is reasonable that you would have caught it. But her physician certainly should have - long long ago. It is routine that they have the kids bend over and then check the length of their spine. No matter where she got her physicals, all her life, they should have caught this. While you are working on this, she probably needs inserts for her shoes. My guess is that the feet are complicating the back. Not causing the scoliosis, but causing other problems.

I have often wondered, but not sure I have said - do you need to get a job separate from your hubby so that you have good insurance?

jen said...

I think as long as you don't treat her like "the kid who always has something wrong with her," she will be okay. Maybe it has just gotten worse as she has grown? Kids can change so much so fast. I wonder if this wasn't part of her migraine/dizziness issues.

Good luck to her and to you, this has to be hard news.

Vickie said...

doing better or still feel like you are in an icky place?

Laura N said...

doing better although it's been a nutso few days. We took a quick trip to Kentucky Lake (stayed at a friend's condo) last week, which was a nice getaway and we all had fun. but on Friday when we were leaving I found lice in Luke's hair. I had to treat him Friday afternoon; it takes hours to comb through hair. and vacuum/clean/ wash&dry our stuff. then I went back down on Saturday to clean the condo (vacuum & put linens/pillows in the dryer). Sophie had lice a few years ago so I've been through this once. I spent 2.5 hours yesterday combing his hair again, and have to do it again tomorrow and then retreat with shampoo & comb again on Friday.

Then our dryer died Saturday night, which was just one more straw on the camel's back.

Kids start school Wednesday. Sophie's open house is tonight--new school, 6th grade. We see her doctor tomorrow for her back. I'm taking tomorrow off to take her and finish getting ready for school (supplies all bought, but want to dot i's and cross t's).

Not much margin in my life right now.

Vickie said...

I have lived in fear of lice for years.

We had a carpool family where school found it in one of their kids hair, mom did not call me, mom picked my kids up in her van. That was our last day carpooling with them (for life).

What I would have to go through with our household and girls hair is mind blowing.

Glad you got away to lake.

So sorry about dryer. I had one January-Feb where every time I turned around something needed repaired or replaced. So hopefully this is a solo occurrence for you.

Good luck with doctor and first day of school. Youngest starts tomorrow (wednesday) also.

Laura N said...

Saw pediatrician yesterday. He had an xray done on the 2nd floor above his office, and we were back to review it with him within 30 minutes. Definite curve. Upper spine curves right, then lower spine compensates by curving left. She sees an orthopoedic doctor on 8/29. Dr doesn't know if she'll need a brace, but my guess is she will since she has 2-3 years of growing left and it's already pronounced. Will have to have xrays regularly until she stops growing. Surgery would only be after she's stopped growing. Sophie is handling it pretty well. Not dwelling on it. She asked him how a brace works, and she got a little upset but I think has put it out of her mind until we see the ortho.

Vickie said...

Make sure they check her feet and knees and hips.

Vickie said...

Youngest has not really grown since about 4th grade. Middle and I both stopped by 6th grade. When did you reach your present height?

Vickie said...

How are you doing now? I just realized how little you have posted.