Dangerous Curves Ahead

Before Evie turned one, I nearly drove myself insane because I believed she was developing a curve in her back. It was small. Tiny really. Nothing that someone who didn't regularly rub her back would even notice. But I did. I held her and rub her back every day. I just knew something wasn't right.

It was confirmed before her first birthday. She had an eight degree curve. Now I know that isn't severe and I didn't really flip out because from everything I read that was manageable. I knew progression of the curve was what we wanted to slow down. I asked about options and at eight degrees there really aren't many outside of therapy. We took a wait and see approach.

Fast forward through a few visits with her orthopedist and that tiny eight degrees did indeed progress (which I expected). Her scoliosis curve shifted from 8 (2011) to 18-20 (2012), then from 18-20 up to 40-45 (2013), and finally from 43 (2014) to 59 (2015). Now there is a margin of error to consider of 2-3 degrees up or down on that scale, but those numbers and her rather rapid progression meant that her scoliosis was not going to be manageable by bracing and therapy alone.

Life at 59 Degrees
November 2015

Every time she had a growth spurt so did her curve. Now we've gotten to the point that her hip is curling up and she can not correct herself at all. When she attempts to stand, without her brace, it doesn't take long before she is tipping to her left and falling (full disclosure: she can't stand independently at all).

In early 2015, I asked her orthopedist at what degree level do we start considering surgical intervention (TIP: never ask a question that you don't want to know the answer to) and in a very direct manner (which I appreciate) he stated fifty degrees. I breathed a slight sigh of relief because we were still sitting squarely at 43 degrees. We scheduled our next appointment for November and went home with our brace and some big things to consider (and research...my favorite thing).

November was a tough month for our family. On the day of Evie's orthopedic appointment, I ended up in the ER with three IV's stuck in my arms and nurses swarming over me. It was the first time I wasn't able to attend her appointment and I knew it was going to be the BIG one. The same gut feeling I had when she was about 9 months old was telling me that her scoliosis was worse. Surgery was going to be on the table. My baby would have one more, very long, scar to add to her growing collection (one muscle biopsy, two hip scars, and a g-tube).

The news came. I screamed (probably scared the ER personnel). The doctor tending me rushed to my side begging me to calm down (my emotions were affecting my blood pressure which was dangerously low). I pushed the phone away and refused to talk to my husband anymore (fyi: he had no idea how serious my situation was, my mom was waiting until after Evie's appointment to tell him EVERYTHING).

Surgery was officially on the table and, much to my surprise, my husband told her doctor to put her on the waitlist for a surgical date. I would have done the same. (TIP: Over the years I have learned it is better to get the appointment or be added to the waitlist and then think over all the options and necessity. You can always cancel the appointment or remove your name from the waitlist later. No harm. No foul.)

The short version of this story:

Evie is scheduled for spinal surgery at the end of March. She and I will be taking up residence at our local children's hospital the day prior to surgery and will be there for three-four nights. The procedure she will have is called MAGEC and they are growth rods (more about MAGEC coming soon).

This WAS NOT an easy decision. I spoke with many people whom I respect and researched scoliosis a second/third/fourth time (the information was still the same as it was in 2011). We know the risks. We trust our team.

I feel at peace with this decision. I have been preparing myself for this since the curve increase of 2013. I know this is out of my hands. I know who holds the future and we will persevere.

*I promise to keep the blog more current as we go through this process.

Trouble with the Curve: A Tale of Scoliosis

Evie has scoliosis. I noticed it when she was about 9 months old (summer 2011). I thought I was losing my mind when I started seeing that tiny bulge in her back appear. I kept asking others if they saw it too. Much to my dismay, they didn't really "see" it or didn't think it was a big issue at the time (in all honesty we had so many concerns I can see where this one might have slipped into the low priority category). I wasn't satisfied. I kept asking at every appointment with every doctor regardless of speciality. Finally, while she was being evaluated for Early Intervention the physical therapist looked at me and asked, "Has she been checked for scoliosis?" I almost burst into tears because she had the same feeling I had and I wasn't going crazy.

Fast forward to November 2013 (yep, it has taken me that long to sit down and write about this) and that small bulge is creating a lot of buzz. It is no longer small. It grew…a LOT!!! What started as an innocent 8 degree curve went to about 18-20 degrees in 2012 and then 40-45 in 2013. All color drained from my face when I saw her x-ray (I also had an uncensored moment complete with explatives). I knew what it meant and what decisions we may be faced with in the near future. Before that point I was hopeful, but my gut knew. It seems my gut always knows.

Evie was fitted for a brace which is supposed to worn at night. We call it her little turtle shell (not very original, I know). She was a trooper when we met with Mr. Bob for her cast and fitting. The first week went perfectly without incident. The tides have changed and now she is becoming more agitated by her turtle shell. Some night she wakes up crying and the only thing that will soothe her is the removal of her brace. On nights she is battling severe, body shaking coughs I don't agitate her further by constricting her chest and mobility. These are occasional events though and the majority of the time she wears her shell. We started taking her shell to school so she can wear it while in her stander…it can't hurt.

Mr. Bob showing me an example of a brace.

Prepping her for the casting.

Making the cast. This was a bit messy.

After Mr. Bob made the cast, he drew a smiley face on it.

Her completed shell. You can tell she isn't thrilled.
Mr. Bob was able to match the brace to her current AFO's.

However, I don't believe it is helping (but since I don't have x-ray vision I can't be sure). We have to wait until next Tuesday (Jan 28th) to know for sure. I hate waiting. I lift her from her activity chair and I can see the curve. I look at her sitting on the couch and I can see the curve. I lay her down in her bath chair and I can see the curve. It shows up everywhere. It terrifies me. The prospect of an eventual surgery twists my stomach into a giant ball of knots.

I wanted to pursue some alternative treatments, but due to insurance caps, financial restraints, and chiropractic adjustments being lumped in with all of her therapies (speech/feeding, physical, occupational) it just isn't feasible right now. We get 35 visits total! That's it folks. Unfortunately, that is the case for many people. So, we have to make a decision between pursuing speech/feeding (not currently receiving at school) and chiropractic adjustments to help her curve. Both are important and have life altering impact (speech will help us move closer to an eye gaze communication device). Which way do we go? What if we make the wrong choice?

Another beneficial item for her scoliosis is a stander (a type of medical equipment that helps improve posture and function). But this has turned into my own personal holy grail and is a story for another post.

Image of a MyGo Stander by Leckey.

Ultimately, only time will tell if we made the right decision. We are waiting for next weeks x-rays before we set our course, but I'm leaning towards keeping speech/feeding therapy intact. But what if I'm wrong...

Sun Beams: Standing Proud!

I haven't posted in awhile because...well...I've been busy and maybe a tad lazy. There was so much going on and so much I want to share that I just didn't know where to start. Unfortunately, I am making this a very short, concise post because we're on vacation starting tomorrow and won't have access to a computer for a few days and while we're gone ALL our computers will be having general maintenance done by our computer guys (BNT Enterprises). So, without further delay.....

Here's some of our most recent good news:

Rae stood! She placed weight on her little feet and stood. She has done this twice this week. I ran around the house looking for my camera, propelled by pure joy, and immediately sent out text messages to friends and family! Here's a pic...

Rae's scoliosis has gotten better and the curve reduced by about 15 degrees! Amen!! If it wasn't better they were going to recommend bracing.

Rae has been consistently prop sitting for 30 seconds or more.

We were approved for Occupational Therapy (OT) to come once a week and met Karen for the first time last Wednesday. She is a ball of energy and a welcomed addition to our care team.

When we get back from our vacation, Daddy is going to put up Rae's new swimming pool and I can't wait. She loves being in the water. Thanks Mimi and G-Boss!

I found a bike trailer on clearance at Target and it was marked 50% off! This was a major score for me because every now and then I feel a little trapped in the house, but the weather here is starting to shift into fall and I can taste freedom from these four walls. Super stoked!

There is so much more I want to share, but time is ticking away and I need to get packed. I hope you all have a wonderful holiday weekend. I know we will!

8 Degrees

My gut was right again. I'm starting to get really tired of being right, which is a big deal coming from a family of Germans who are "always right." I think, more than anything, I'm getting tired of being right about the bad stuff. I was right about Rae's physical development being off (Hypotonia), I was right about her having Infantile Scoliosis, and now I was right about our follow-up not baring good news. I've been right about equally upsetting things recently as well, but that's a whole other story.

Yesterday, Rae had her follow-up visit with Dr. S, her Orthopedist, and I would have loved to come home and report that her Infantile Scoliosis was maintaining or regressing below the initial 20 degrees that was reflected in her x-rays last September. However, that is not the case. The "C" curve has increased by 8 degrees with a +/- 5 degree margin of error. In which I find no comfort. Now, I know that doesn't sound like much, but when your looking at a condition that slowly progresses with time and more rapidly with every growth spurt and your child is only 17 months old...well that's just a tad bit upsetting.

To make matters worse, information my husband and I have read doesn't offer a positive spin on the less invasive forms of "treatments" for scoliosis. This has been reinforced by Dr. S, who didn't feel like the options available would be of any true benefit, but he's open to suggestions or, if we press it, placing Rae in a brace and/or authorizing more therapy. We also have to consider the effect a brace could potentially have on Rae's physical development in relation to her Hypotonia. If the brace keeps her straight and holds her in place then her muscles wouldn't have to work and would not become stronger. It's a double edged sword. The whole thing just feels hopeless and, while I know it isn't, I feel like I'm ready to grasp at any straw presented that may offer some benefit. Notice, I don't use the word benefit instead of cure because much like her Hypotonia there really isn't one.

Dr. S believes, since Rae is Hypotonic, that her Infantile Scoliosis is actually Neuromuscular Scoliosis. Okay, well that's just comparing a Pink Lady apple to a Sundowner apple, both apples have a similar taste and come from the same fruit parents (Golden Delicious and Lady Williams), but their color is slightly different. Similarly, there is no real difference between Idiopathic Scoliosis and Neuromuscular Scoliosis other than the cause. The treatments for both are the same and vary depending on the degree and type of curve.

So here are our options (listed in order of desirability):

• Observation - Which is what we are currently doing and it isn't really recommended by other medical professionals since it delays treatment.
• Therapy/Exercise - We are already have PT in place and Anna and I will be discussing this new development tomorrow. Exercises will have to wait until she is older due to their physically complicated nature: Scoliosis Exercises.
• Chiropractic - My husband is not a huge fan of this option, but I'm willing to give it a go.
• Homeopathic Alternatives - Like the Bach Flower, which is only one of many, and I have my Aunt checking into these options (she has a Doctorate in Homeopathic medicine).
• Bracing - It's like encasing your child in a turtle shell. Here's an example: Providence Brace or when they are older this form may be an option Spinecor Brace.
• Casting - Which varies depending on the type of curve and is usually done in case where the child is young (toddlers). Dr. S doesn't recommend casting and it can be quite the ordeal as evidenced by fellow blogger Emily, who writes about her son, at Infantile Scoliosis - J's Diary.
• Scoliosis Boot Camp - Which utilizes various manipulation contraptions to readjust the spine and correct curvatures. This isn't a possibility until she is older.
• Surgery (just a short sample of surgical options)
• Spinal Fusion
• Harrington Rod Surgery
• Vertebral Spine Stapling

In light of this news, I am going to make every effort manageable to be proactive and try to keep a positive outlook. Keeping in mind that I must also be realistic (I have already reviewed the application for the Shriners Hospital for Children). I'm so thankful they don't take household income into consideration or we'd be screwed with a capital "S". In addition, I am going to do my best to see the good things, not just the bad, and take comfort that I have wonderful family and friends standing beside us every step of the way.

To quote my Mom:

"Damn, that can be depressing, but that's counter productive and I choose to be resolved (right after I scream). We are all in this together. We can do it."