Hello and Hi- Five on Five , Catching up, and, A Scoliosis story

We are more than halfway through the year.  What the hell, how does this stuff happen? I feel like I haven’t caught my breath since Memorial Day and it’s already Thanksgiving according to TARGET. I don’t like it!  It seems unreasonable at times how fast it all whirs by. Like, I have a freaking 6th grader. And a 1st grader. Mind blowing.

So it’s  been a while since Ive been here. Work has been busy, and life has been busier. I’ve been struggling how to word life at the moment, because it’s been one of THOSE times. The times when you have to dig deep. The times when you find out what it is you’re actually made of as a person. And I’ve been scared, and vulnerable, and I’m not good at sharing any of that.

Three months my youngest daughter Phoenix was diagnosed with Severe Early Onset Scoliosis, a chronic condition that we/she will live with for the rest of her life to some degree. Her spine, is  way curvy when it’s supposed to be, well, you know,  straight. It affects 2-3 % of the earth’s population. 90% of those 3 % ? No known cause. It’s scary because if left untreated can cause lung and heart problems. Hearing anything is not right with your child is hard. Harder than hard. I was numb for the first two weeks. I drank a lot of wine to cope. I worried so much my stomach was sick. It took me those first few weeks for the information to settle. I listened to all the doctors had to say, and came to terms to what we need to do as parents, and what Phoenix has to do.  She’s been nothing short of amazing. Our first treatment has been bracing. She is currently wearing a brace for 23 hours a day. The brace is a rigid plastic with push points that will hold her spine at a lesser curve in the hopes of preventing any further curve growth.  We are pairing that, with physical therapy once a week to strengthen her core muscles, and stretch the muscles in her back.   We are also doing Craniosacral Fascial Release. Also there have been lots of prayers . Lots and lots prayers. I felt so alone when Phoenix got this diagnosis. I did have only one friend when I was growing up who had scoliosis. She was the first person I called when I found out about Phoenix. She talked to me for hours. I slowly but surely found Facebook groups, and other parents who face similar challenges with their little ones. I’ve learned so much. Knowledge truly is power because I feel so much better than I did back in late May. I feel like a figher, and I know that Phoenix feels like one too.  We had our first checkup a few weeks back and the docs were very happy with her early results. They said that her back is looking great in the brace. I know that the Craniosacral work is doing wonders for her, and would encourage any scoliosis patients to seek it out if they have not already.  Three months ago I knew very little about scoliosis. All of this came as a complete shock. I didn’t think a curvy spine could be such a big deal. Believe me, it’s a big deal. Scoliosis can cause a host of problems to a little one’s development if not taken care of. If you’re reading this and have a child, check their back. Usually the back check happens at the pediatrician or at school, but for Phoenix, she progressed very fast and it happened in between visits, a year and a half’s time. If you are looking at your child’s back and it looks odd, get it checked out. Girls develop scoliosis 8 to 1.

Phoenix will continue to deal with a curvy back her whole life, unless we, or she later on chooses to surgically have it fused- We are not thinking about that at this time, as is this is something we wouldn’t consider unless necessary. Thanks to all the prayers and well wishes you have sent me, her, and us, and keep em coming.  It’s been felt big time!

 

So that has been my summer. I have not shared a picture here since April.  I’m making up for it today. I’m posting some of my favorite pictures from May, June and August.

The first set is when Phoenix got her cast and brace at the hospital. She is my hero.

Raven, my oldest , also completed elementary school and I have some pics of her and Phoenix outside of their school.

We also went to Comic Con Philly, where my kids dressed as characters from Dr. Who, namely The Doctor, and Amy Pond. We  went on vacation for a week  to Chincoteague, Virginia. It’s my happy place.

 

June

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What does Scoliosis look like? Here is what Phoenix looks like without her shirt, bent over, the test that many of us had in school. Many with scoliosis have things like uneven hips and shoulders, and rib hump when they bend over.

 

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Here is Phoenix holiding her curvy x ray.

 

Below is Bracing Day. She was awesome.

 

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Holding the mold of her new brace.
Holding the mold of her new brace.

 

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Our super hero.
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All the way to the right, the blue hand is Phoenix’s. She added her hand the wall at the Children’s Hospital . I like that the middle there in a heart.

 

 

 

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My beauties outside of school. Raven’s last year here.

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COMIC CON!!!

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Vacation!! All of us!

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July

 

Our family lost our big kitty man in July. This was the last picture I took of him.

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August

 

A day at the beach with my family.

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We stole a few days back to Chincoteague. fivers-7225 fivers-7243 fivers-7251

This post is part of a blog circle that I share with a few awesome lady friends. If you’d like to click on over to Miss Jill’s blog, click here. http://www.jillmcadoo.com/blog

I hope that I can get back to blogging here on a regular basis, I do often have so many thoughts I want to share! Thanks for reading, and listening.

 

 

 

 

 

 

 

 

 

 

 

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3 Comments Add yours

  1. Staci Lee says:

    You amaze me. I have read this post twice and have been in tears each time. You have given your girls the gift of a beautiful soul. xx

  2. vanessa says:

    yes, tears. These are so beautiful and POWERFUL. thank you for sharing your girl’s story. I know it has been a journey. Sending love, light and giant HUGS!

  3. Jill McAdoo says:

    You all are my hero. Hope this epic summer gives way to an easy winter. ❤

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