"D" Day: One Year Later

A year ago, we started laying the foundation of a new life. A life we were not prepared to live. A life consumed by Rett Syndrome. At first glance, I didn't believe the diagnosis of Rett was so bad. You see, for the two years prior to this day we were searching for an answer to our daughters developmental delays and physical ailments. Along the way, I became friends with other parents (my Hypotonic Warriors) searching for an answer just like we were. Some of those answers came in the form of Spinal Muscular Atrophy Type I (to name one…you can read about Connor and his family at Struggles Of An SMA Family) for which there is no cure and life expectancy is very short (10% chance they will live past 2). I cried with them. And I feared our own mystery diagnosis just a bit more. I never knew there were so many syndromes and diseases out there beyond the ones we have all heard of like Cerebral Palsy, Down Syndrome, and Autism. It has been a real eye opener followed by a squirt of lemon juice.

The morning the report arrived, (via email) I was relaxed and enjoying a cup of coffee. Evie's dad said he received a notice from Medical Neurogenetics that we had a message. I was no longer relaxed. I leapt from my chair and ran to my computer to log into my encrypted account. I read quickly scanned the report (most of which I didn't understand…it was medical gobbley goop) that said Evie had Rett Syndrome it didn't sound so bad. I was hopeful. I am still hopeful. But my rose color glasses quickly shattered. Rett has many layers that overlap one another and create compound complications with no easy solutions. I have lost count of all the things Rett has stolen from us as a family and Evie as a person. It is a long list. A lot of dreams and hopes were mourned during the last twelve months. The grieving is not over. There will be more. But I try not to bog you, my readers, down with all the dirty depressing details. I'm fairly certain you can fill in some of those blanks on your own.

So, as I sit here reflecting on the last year and trying to piece together my own feelings (way to many to manage at once) I am going to force myself to tell you about the great things that have developed since "D" DAY.

1. I became a part of a wonderful supportive family, my Rett family, that is always willing to help me when I have a question or a concern. Sometimes just being an active member of an online support group will answer more questions than I can even come up with on my own. We're all just trying to make the best of a pretty nasty diagnosis. Advocating for our girls (and boys), learning to be their voice, giving them the opportunity to have a voice (via eye gaze communication systems), researching new therapies, adapting toys, creating equipment, making our own solutions to problems most retail stores don't even address, cheering each other on when we think we can't take anymore, grieving with a family when another silent angel gains her wings, celebrating each victory… I could just keep going here.

2. I became involved with Girl Power 2 Cure (GP2C). I met Ingrid (and many other members), whose energy never ceases to amaze me, and whenever I spend even a hour with her I come away feeling hopeful, refreshed, and ready to tackle Rett Syndrome. I consider myself very fortunate to live just an hour away from their volunteer center and will be making my way there in the beginning of February to help prepare for the Disney Princess Half Marathon (if you would like to make a donation to Team Maria click here). This organization has a passion for a cure to Rett Syndrome, for our girls, and for their families. GP2C just launched Rett U, which is an online learning platform for educators, therapists, physicians, and families of girls with Rett Syndrome. It is designed to help them learn, "how to support their students with Rett Syndrome and push them to their highest levels of academic, physical and personal achievement." To me it is revolutionary and a game changer. Watch this organization because they are doing BIG things and I'm glad to be a part of them!

Awareness, research, hope, and a cure!

It is possible!! We believe!!!

3. Evie received her wheelchair and we've almost finished building her wheelchair ramp on our home. That has been a work in progress for about six months now (nine if you count all the fund raising) and we're getting close to the finish line. We could not have accomplished this monumental task without the help of my parents, our family, our friends, co-workers, our neighbor, and my parents church family at Gardenview Baptist. I felt so blessed by those that have come to our home on their days off to help and to those that donated items and helped work  our massive garage sale (we're doing it again this spring so time to clean out your attics, closets, and garages). I have been so overwhelmed by the support and generosity that I've cried.

4. We said goodbye to our Early Intervention therapist and then said hello to our new team of therapists and teachers at Evie schools (which I never wrote about). I was so nervous when we first started the process to move her into the school system and it went so smoothly. That may not always be the case in future years, but it was a great first time experience with creating an individual education plan (IEP). We have her enrolled in a classroom that is a certified MOVE International site. During her first week of school we got to see  her stand upright and it was…there are really no words to adequately describe how it felt seeing her standing (she had assistance, but so what). Three months later and she is taking strong steps with her right foot, sitting up straighter, babbling more, and is blossoming. I can't wait to see her bloom!

5. I submitted Evie for a runner through I Run 4 and we were matched with Shana. She is a chiropractor in Knoxville, TN (KnoxvilleSpine.com) and it has been wonderful getting to know her. The relationship is one of support, encouragement, and inspiration. I Run 4 matches special needs children and adults with runners (but not limited to) to help give them inspiration to continue running. Many families and runners develop close bonds with each other and if you would like to be matched, you can submit your request here.

6. I started boxing. After 3 years of lifting, carrying, and supporting Evie physically I ended up with multiple micro tears in my muscles (mainly upper body). It was constant pain and I was supposed to "take it easy" (haha!) until it healed. I've known for at least a year that the physical demands placed on me would increase and I needed to strengthen my body. I'm not a Zumba girl (I have no rhythm) and I'm not supposed to run (bad knees). I also needed some kind of outlet for all the anger. I'm pretty angry sometimes… Angry at Rett (among other things). I used to take a hammer to our dilapidated fence, but it wasn't enough. A friend has an all women's boxing gym called Boxing Bunnies. I started going twice a week last month. It's a perfect fit for me. I'm already feeling a difference in my knees when I have to squat to pick up Evie's wheelchair (all 64 pounds!). I'm still angry, but twice a week I get to direct that anger at a punching bag or wrecking ball. Maybe running will be placed back on the table in a few months.

7. Our oldest cat, Moo-Shu, has finally taken a liking to Evie! Over three years she went from keeping a safe distance to allowing Evie to fall onto her and not move.

I have so much more I'd love to share, but I have to stop at some point otherwise you'd be reading a novel and not a blog post. I'm actively trying to take better care of myself. Evie is making great progress at school. We have a wonderful Rett family to lean on in times of need. I'm inspired by GP2C's determination and hope. Evie has become an inspiration for others. We have been blessed beyond measure and I constantly remind myself of that. This last year has flown by and creeped by at the same time. I wonder what the next year holds for us. Oh, and I still have that Louisville Slugger ready to swing!

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...

Road Safety: What If You're Not Conscious?

Every parent can relate to the "what if" dialogue that runs through my mind. We shoo it away not wanting to think ill or dwell on all the things that could go wrong and just hope that the worst won't happen to us. We can't imagine not having our little ones with us or heaven forbid us not being here for them. It is a universal fear.

There are things we do that offer us some peace of mind and if you haven't done any of these (which honestly we haven't and need to) then maybe it's time to be proactive and silence some of those "what ifs" that plague us. Some of the BIGGER things are a bit more daunting (like setting up a will, trust, or designating guardians), but maybe we should start off with something smaller and a bit less intimidating.

One of the things that I fear the most is being unconscious after a car accident (if you knew my track record you'd totally understand why). If I do not have all of my faculties (or if I'm knocked out), I will not be able tell the EMT's about my daughter needs or her medical conditions. Who is going to tell them all the things they need to know about Rae? We always assume we'll be fine or they'll be able to contact the right person, but that's not always the case. There are a few simple solutions to this anxiety inducing fear.

Here are a few helpful products and ideas I've found:

1. An informational sticker for your vehicle: You can find this one on Amazon.com and it is $2.89 per sticker (plus $1.50 shipping…I'm sure price is subject to change). I have one on each side of our van. It gives me some peace of mind at a low cost.

This one is made by Magnet America.

2. Tape emergency contact information (and any other pertinent info) onto your child's car seat. I have seen this on Pinterest and still haven't made one (it's so simple, why have I not done this yet?!?). You can find a list of information to include over at Don't Pat the Belly and remember to look at your carseat to determine the best place to put your sticker (basically make sure it will fit). Other than the cost of ink, paper, and tape this is almost free!

Image from www.dontpatthebelly.com.

3. There's an app for that! Did you know there is an app you can download call LostFound - Emergency Contact Banner Maker by Doubleforte. The app will allow you to create an image with emergency contact information on it for your wallpaper lock screen. This became more of a necessity when Apple added the passcode lock with their last update. The app is .99 cents! A simple and inexpensive way for emergency responders to know who to contact when you aren't able to tell them. I have the app on my phone and Rae's iPad. The iPad app will allow you to enter more information than the iPhone app so I was able to add Rae's diagnoses (critical ones) and her allergy to penicillin.

Screenshot from iTunes Store.

4. Medical Alert Jewelry: Lauren's Hope offers a large variety of customizable jewelry for everyone (men, women, girls, boys, and pets) that will inform people about your medical needs in the event of an emergency. They are stylish, fun, and functional! We haven't purchased one for Rae yet, but will in the near future. Prices vary depending on the type of bracelet and number of lines.

Purple Lipgloss Medical ID Bracelet by Lauren's Hope.

5. Car Escape Hammer: If you are conscious, but can't get your seatbelt off or your window down you may need one of these handy little hammers (they even have a keychain version). The prices vary (LifeHammer is currently $14.80 on Amazon.com), but you can easily purchase one for under $10 and they are sold at many major retailers. My friend used to worry about getting in an accident,  going off a bridge, and getting trapped in the car with her kids. Then my dad gave her one of these and it gave her a little piece of mind. I have one of these tucked in the side pocket of my door. I know this veers off topic just a tad, but I feel these hammers should be in every vehicle on the road.

I have a few more ideas that may be helpful like small luggage tags for her backpack or an insert that stays in our glovebox with our registration and proof of insurance, but I have not done either of those things yet. This is something that I need to put at the top of my to do list. We are on the road more often than we used to be since Rae started school and my lack of preparedness is being to bother me.

My project for next week is to sit down and create an emergency medical information sheet. It will list Rae's diagnoses, her doctors, her allergies, our preferred hospital, a list of her current medications (dose and time given), her emergency contacts (Daddy, Mimi, and G-Boss), and anything else we feel is important for someone to know about her. I will also do one for myself, but it will be a much shorter list.

It's the holidays and that means people are traveling to see loved ones and friends. Take a couple of minutes to write out your emergency information and give yourself the gift of peace of mind. Be safe out there and make sure those that are there to help have the information they need to in order to help you or your little ones.