Wednesday, September 3, 2014

Upper EnDO or EnDON'T

We're at a crossroad again. I'm standing here (actually sitting) trying to make an educated decision about how to proceed. We've hit a few rough patches this summer including:

  • a battle with pneumonia (a four letter word in our home)
  • a hospital stay (likely more pneumonia)
  • a sleep study (moderate obstructive apnea)
  • some insane sleep disruptions (full blown night terrors with screaming and tears)
  • the addition of a suction machine (like the one used by your dentist)
  • another mystery illness/infection that has resulted in another round of antibiotics (don't judge, you're not in our shoes)
It's time to make some more decisions and I don't feel qualified to make them, but we're the only ones that can say yes to the proposed course of action that includes:

I know it doesn't sound like a lot or even very drastic, but I see what they truly are…milestones. The end of the small, easy tests with simple answers. The tide is changing. The stakes are getting higher. I had finally found my sweet spot with our day to day routines. Now I am just standing here with no idea which way to turn or what it may mean for Evie and for us if we do (or don't) pursue some of these options.

Am I more afraid of the obstructive apnea or of a surgical procedure to remove her tonsils and adenoids? (which in all likelihood the doctor will not support, but I have to ask)

Am I comfortable authorizing MORE testing, uncomfortable testing that requires sedation and a hospital stay?

What changes will we have to make to her diet if she is now aspirating food particulates like we suspect?

It is a ever changing world that we live in. I find it unsettling most days. (or at least when I allow myself to think about it)

If you ever think you're tired of your monotonous, boring, somewhat predictable life, please take a moment to be thankful for it because the alternative can be downright nasty.

Where Shopping is a Pleasure

Do you have a Publix where you live? Have you ever been to a Publix? Do you know what you are missing? Munching on their crispy chicken tenders, sipping their sweet tea, and satisfying your sweet tooth with one of their sugar cookie can become addicting. To put it simply...

We love our Publix!!!

Not just because of their food, their coupon policies, or their cleanliness. What makes Publix so incredibly AWESOME is their customer service. Their willingness to help you find something, even when you don't ask. Seriously, they see you cruising slowly down an aisle and will just offer assistance.  Is the product you're looking for not on the shelf? They will go check to see if they have more in the back (instead of saying, "I don't know" while shrugging…cough, cough…Walmart...cough, cough). 

What is best is the interaction between the employees and Evie. They always talk to her and ask how she is doing (on the rare occasion she stays home). Hands down her favorite department is the bakery (and the apron strings kiosk). She loves getting her cookie!





Saturday, August 23, 2014

Save Access to AAC Devices!!!

If you are reading this, you probably have access to the internet from either a home computer/laptop, an iPad/tablet, or a smartphone. You probably have WiFi or 4G access that allows you to email your friends, family, and colleagues or post about your day onto Facebook, Twitter, or Instagram. If your internet or wireless service goes on the fritz you can probably pick up your phone and call a technician to complain.

Congratulations!!!! 
You can communicate and participate in the world around you.

***********************************************************************

Now, imagine that you do not have the ability to communicate at all. 
Zip. Zilch. Nada.

Many (if not most) individuals with disabilities/disorders like Rett Syndrome, ALS, Spinal Muscular Atrophy, spinal cord injuries (this list can go on and on) are not able to communicate verbally with the world around them. The very people that are responsible for their medical care, their meals, their clothing choices, their everything... operate on the assumption that they can decipher what someone else wants or needs. Sometimes that may be a slight smile, a tilt of the head, or a "look." But we are still just doing the best we can to pinpoint what they need/want.

My 3 year old daughter is non-verbal and sharp as a tack. We make a lot of guesses about what her needs and wants are on a daily basis. Sometimes we are right and sometimes we are very, Very, VERY wrong. We have attempted different forms of communication from low tech (picture cards) to high tech (iPad apps) and due to her limited hand control (thanks a lot Rett Syndrome) those forms have been less than successful.

Our hope was restored when we learned about a company called Tobii Technology. Tobii is the leader in eye gaze technology which allows people like Evie to communicate using their eyes. There is a lot of technical jargon that I can spout off, but basically the computer has fast cameras which track her eye movement and allow her to select words and activities. She can communicate!!! But the device cost between $17,000 and $20,000!!! OUCH! (the ability to communicate is priceless, but that still hurts)

video
Watch how well she is able to navigate.
This was the first time she had access to a Tobii for more than 15 minutes!

Now that very hope is being threatened with pending legislation for Medicare (their regulations quickly become industry standard) and we need your help.


The attack began in April 2014, when Medicare implemented a policy that denies patients the use of medically necessary speech generating devices (SGDs) upon admittance into a healthcare facility (hospice or nursing home). The one place that a person with complex medical concerns should be able to communicate with their caretakers, doctors, and loved ones.

On September 1, 2014, the second wave will become effective. Medicare will no longer fund a SGD that has the ability to connect to the internet. Previously, they allowed the user to "unlock" the internet feature at their own expense, but now that is not even an option. This means users will not be able to interact with anyone beyond the confines of their own room. 

NO email. NO texting. NO Internet. 
NOTHING! 

Lastly, Medicare's wait list for SGD-eligible beneficiaries who need eye gaze technology is YEARS long. Some individuals never get the chance to communicate with their loved ones or have meaningful input regarding the final stages of their lives because of this backlog. The routine denial of access to eye gaze technology is unacceptable. These people jump through all the hoops, cross all the t's and dot all the i's and still meet the brick wall that is Medicare.

Please read and sign the petition below and/or contact your local representative. Tell them that this legislation is not acceptable. Tell them that everyone has the right to communicate with the world outside of their home. Tell them that people have the right to talk to their doctors, nurses, caretakers, and loved ones. If you woke up tomorrow and could no longer speak to those around you and purposefully use your hands, wouldn't you want someone to fight for your right to have access to a speech generating device? Please help.

The deadline to sign is August 27, 2014.


Find your local representative:

Find your senators:

Friday, August 8, 2014

Wheelchair Faux Pas. Oops, My Bad.

Suffice to say that Evie sitting in a wheelchair is pretty normal for us. It wasn't always like that. There was a time when the thought alone would reduce me to tears. Now it has become so normal that I sometimes forget that it isn't everyone else's normal.

One afternoon (around Christmas), I allowed a friends daughter to sit in Evie's wheelchair. She is a year older than Evie. She can run, talk, feed herself, hold a cup, sit on a potty, and swim. She is "normal." She is also curious (most pre-schoolers are) and thought sitting in Evie's chair would be great fun. I encouraged it, even said they could take a picture (which her mother reluctantly did, but I doubt she kept the pic). It never crossed my mind that seeing her daughter sitting in a wheelchair might not be a memory in the making photo op for her. Oops. My bad. I didn't think of it that way because I didn't see the situation through her eyes.

Here's what I saw.

  • I saw an opportunity to show a little girl that wheelchairs aren't bulky pieces of equipment to be afraid of or shy away from. They are just chairs with awesome wheels. Evie's chair is extra awesome because it's raspberry pink! 
  • I saw a smile spread across her face and a twinkle in her eye at the prospect of sitting in that awesome seat that is custom made for my girl. 
  • I saw her laughing, just like Evie does, while sitting in that chair. 
  • I saw her not thinking about how sad it was for Evie to need a wheelchair (a rare occurrence).

A child's acceptance is a precious thing. My friend's daughter didn't know, or understand, what that wheelchair symbolized to the adults around her. She didn't care. She just accepted it for what it was…a chair. But, that won't last forever. She'll grow up and the understanding will come.

I am confident that her parents will teach her that people who need medical equipment are people just like her. They aren't someone to be afraid of or ignore. I wish I could say that about all parents.

I have accepted the wheelchair. I don't like it, but I have accepted it. I have also accepted the looks we receive from those around us. I don't always like those either. If I manage to catch their eyes I give them a big smile (most days). If the opportunity presents itself, I will introduce them to Evie. Is it easy? No. Does it help? Maybe. Will they see my daughter and not her chair? Absolutely.


Monday, July 28, 2014

Rae's Book Review: Just Because

I happened upon a book a few weeks ago. A small, unassuming book tucked away in the children's section of my local Barnes & Nobles. I can't even tell you what compelled me to pick this book off the shelf, but the moment I read the first page I knew it found a home in my heart and on Evie's bookshelf. I walked to the counter, clutching this book to my chest, overjoyed that I finally found a book that represents Evie perfectly.


Just Because was written and illustrated by Rebecca Elliot. It is inspired by her children Clemmie, who has severe special needs, and her little brother Toby. On the first page, Toby introduces us to his big sister, saying she is his best friend. He then informs us that, "She can't walk, talk, move around much…," and he doesn't know why. "Just because." Such a simple, no nonsense statement.

As Toby continues to talk about his relationship with Clemmie, it becomes even more endearing and I swear Rebecca could have been writing this about my daughter (only without the sibling).


Clemmie is a lot like a princess (so is our Evie).


She makes sweet noises and funny faces
which make Toby laugh (so does Evie). 


She has an great chair (just like Evie).


She has enormous hair and hates her hair being brushed.
(Evie has complete meltdowns when I brush her hair)


Just like Toby, I know why I love Evie. Just because.


I discovered that this is the first of two books about Clemmie and Toby! They return in another book titled Sometimes and they find themselves in the hospital making the best of a not so great situation and helping each other overcome their fears. You can find both books on Amazon.com


Monday, April 28, 2014

The "R" Word and Beyond

The other night we went out with family and friends to celebrate my mom's birthday. It was a lovely evening, great company, and tasty Italian food. We took Evie out in her wheelchair and everything was going smoothly. Then she had an episode (her small body goes rigid, her hands become manic, and she breathes heavily) that lasted about ten to fifteen minutes. I sat there in my chair, cradling her stiffened body, feeling helpless and trying not to cry. It finally passed. I felt relieved and worried at the same time. My husband excused himself from the table to take a call and I handed Evie off to G-Boss. Then the second upsetting event occurred that evening...

As I sat there collecting myself after her episode, a sound I am all too familiar with made it's way to my ears. The sound of adult men (about mid 30's), sitting no less than 6 feet from me, making "retarded" noises. I'm sure you can hear it in your head now. These sounds are sometimes heard when someone is telling a story and decides that either someone or something is/was stupid and the best way to convey that is through making fun of those that are not able to articulate well, have no real control over their vocalizations, or can not communicate any other way (like our Evie). I felt torn. We were at a nice place, it was loud (so I wasn't fully aware of what they were conversing about, but I was totally sure about what I heard), and I was feeling emotional. Probably not the best time to approach strangers about their insensitivity to those around them.

I related this story to my online support group and it brought up other instances when we just don't know how to approach someone (especially if is a co-worker, friend, or family member) when situations like this occur. Then I remembered a similar situation with someone I love very much. They used the "R" word to describe another driver on the road. I was on the phone with them and felt comfortable saying something. It was the first time I actually spoke up about someone using that word and will probably not be the last.

However, it isn't limited to the "R" word. People who jokingly say, "Aww...isn't that special...special ed!" or who mockingly make unintelligible sounds and spastic gestures to indicate someone or something being "stuipid" are equally insensitive. We hear the same excuses all the time when people are trying to justify this type of behavior or use of the "R" word, "We didn't mean it that way," (doesn't matter it still hurts) or "I don't think of him/her like that." (how does that make it okay? what about other people?)

When it comes to people you know the best suggestion I have is to ask to speak with them privately (no one likes being "called out" in front of others). Explain to them that while you know them and (on some level) understand they aren't aiming those comments toward your family member or friend, it still hurts and other people don't know them may not be as understanding. Approaching strangers is a totally different story...I still haven't figured that one out just yet and usually sit in silence

I do have a few friends that casually use the "R" word and it always feels like they just screamed it through a mega phone. I stiffen and bristle, but I give them some slack. I know their hearts, but maybe my silence isn't doing them any favors because others don't and they may become the fuel that ignites a fire.

Sunday, April 13, 2014

Momma Said Knock You Out

I LOVE BOXING!!!

When I first heard of my friend's boxing gym (Boxing Bunnies) I thought, "I might enjoy that." But I was very hesitant. I still had Evie at home full time, logistics just seemed insurmountable, and what if I looked ridiculous (at times I'm sure I do). I told myself, "Wait until she is in school." And that is exactly what I did…I waited. Then it was time to put up or shut up.

I took the leap in January and committed to two months of unlimited classes. I told myself I would go at least twice a week and as time progressed I would increase my workouts (I am now up to three classes a week). During my first class I felt a bit intimidated. There were women there that had obviously been coming for quite some time (seriously, some of them are beasts on a heavy bag). I felt like I just couldn't keep up. But I was not willing to turn in my boxing gloves just yet.

You see, I have some pretty strong motivations for pushing through the pain. I need to be stronger and healthier in order to care for Evie. She needs me. If I am not there for her, then who is going to be there? I also needed an outlet for my anger. Watching my baby girl struggle to do the simplest of tasks makes me so angry. It was festering inside like a cancer. I stopped feeling joyful. I stopped finding things humorous. I stopped being me. Sure, I could plaster on a smile and fake it well enough when I needed to, but those closest to us knew I was slipping away into a world without hope. Ann Marie and my fellow Bunnies became one of my life savers (the other one is a topic for another day).

The workouts are intense, our trainer is an evil monster at times, but we always have fun and we are always supportive and encouraging. Don't feel comfortable doing Hello Dolly's? No problem we'll work out a modification that will work for you, but keep trying because you'll get there (barring you have a physical complication that makes it impossible).

While I was initially intimidated by those feminine beasts beating those bags, I was also inspired to get to where they were. I was not going to be satisfied just getting through my workouts. I wanted to knock them out! It was a competition against myself to be better than I was during the previous workouts. And it is working.

  • I can hold a plank for 60 second (not every time, but I'm getting there).
  • I can do at least 10 push ups (on my knees) in a row and not feel like I am going to die.
  • I have a pretty decent right hook.
  • My arms and calves are starting to get some definition.
  • My knees don't hurt as much as they did before I started boxing (except for a recent case of tendinitis).
  • I can do a burpee!!!
  • I spar and have taken a few good shots to my well protected head.
  • I also learned how to braid my own hair.
  • And I swear my butt looks better (but it could be in my head).
I didn't measure or weigh myself the first two months. That was not my goal (but it is a perk) so it was not important. However, at the beginning of March, I measured myself and by the beginning of April, I was down an entire inch around my chest, half an inch in my waist, and a quarter of an inch in my hips. My clothes fit better (in fact some are too baggy). People have been noticing that I look slimmer (Woo-Hoo!) I'm happier and feel more balanced. I have more confidence in myself. I honestly feel like if I set my mind to something I am going to do it!

That confidence has led me to decide that I CAN (and will) run a half marathon in honor of my daughter. Over the last four months I have built up my endurance, my strength, and my determination to cross that finish line at the Disney Princess Half Marathon*.

*Team Evie already has a group on Facebook to keep people up to date on my progress, fund raising (my personal goal is $5,500K), and information on how you too can help us in our quest to cure Rett Syndrome by joining team GP2C at the Disney Princess Half Marathon in 2015! You don't have to run to help make a difference.

Thursday, February 6, 2014

Disabled Parking: We Don't WANT to Park There!


The decision to apply for a disabled parking permit was not an easy one. I cried because I knew we needed it and I was angry because we needed it. I also feared that because Evie appeared "normal" and didn't have her wheelchair that people would question our parking in a coveted (dripping with sarcasm) disabled parking spot and confront us. I've heard horror stories about that happening. I wasn't concerned about crying in front of strangers as much as I was worried I'd end up in jail after knocking someone's teeth loose (did I mention I was angry?).

I read about Florida's process for obtaining a disabled permit, received the appropriate forms from Evie's pediatrician, had a state ID made for her, paid the fees, and with a heavy heart and giant chip on my shoulder walked out of a local DMV with a blue parking placard. It sucked! It still sucks!

The rules for obtaining, using, and renewing a disabled placard are fairly simple. The permits are registered to a specific person and if they are not in the vehicle then you are out of compliance with the law. Registration and ID must be available for verification if asked.  When it is expired, go through the process again. If you don't go through the proper channels and don't have either one of these options:

1. Hanging Blue (permanant) or Red (temporary) placard; which, should be displayed on your rearview and the permit number must be visible (some people lay them on their dash).


 2. Disabled License Plate (which must be on a car registered to the disabled individual)


(Florida also offers a version for Disabled Veterans)



Then you DO NOT get to park in a disabled parking spot! No exceptions!! EVER!!! If you are caught using someone else's disabled permit you can be (and should be) fined (those fines vary state to state) and the person it is actually issued to legally can loose the privilege (that's right it is a privilege, not a right) of having it.

My moral compass goes beyond that point. If I am with Evie and another adult and I need to just pop into a store for a moment I DO NOT park in a disabled parking space. If she is not physically going into the store with me then I have no right to use that space (rain or shine, sick or well). My legs work just fine. I do not have a heart condition. I do not have a respiratory condition. Walking just a bit further will not worsen my condition…in fact it may actually help it. I tell you all this because since receiving Evie's permit I see people abusing the privilege to park in a disabled spot or just refusing to abide by the laws concerning them.

Just because you borrowed grandma's caddy for a quick trip to pick up her meds, DOES NOT mean you can park there.

Just because you are going to a crowded event and don't want to park in the south forty, DOES NOT mean you can park there. Some attendees at a Nascar event learned this lesson the expensive way.


Just because your spouse/friend/family member has a legal permit and you are diving their vehicle or have their placard without them, DOES NOT mean you can park there.

Just because you are pregnant, DOES NOT mean you can park there.

Just because you are injured or don't feel well, DOES NOT mean you can park there.

Just because you are making a quick return to Toys R Us, DOES NOT mean you can park there.

Just because you are waiting for someone at the doctor's office, DOES NOT mean you can park there. EVER!!!
I was witness to this just this past week. The woman was casually reading a magazine and sipping coffee. I looked her car over and saw no permit…anywhere! I almost confronted her, but did not feel I would be able to contain my anger (but I did give her a pretty stern stare down). I told the front desk admins and they went to inform her she needed to move her truck. She was already moving it before they could get to her. She knew she was in the wrong and that I caught her.
I do not even WANT to park there!!! Do you think we are secretly gloating that on Black Friday we have permission to get the "good" spots? We have to jump over so many hurdles can you just act like decent human beings and give us this one?

Be warned… Karma is a heifer! Heaven forbid those of you that think it is ok to use those spots just for a minute will ever actually need those spots for legitimate reasons. Someday that may be the case. Then you will understand the frustration people like me, with a disabled toddler, family member, or friend, feels on a regular basis.

This is NOT a victimless crime. You ARE hurting (maybe not physically…actually it does hurt some of us physically) someone else who needs that parking spot.

Don't believe me then do this simple exercise:

Buy a 20 pound sack of potatoes (or two 10lb bags). Park two rows away in the middle or farthest distance away from the entrance of the store. Exit your car, grab your purse, the shopping cart cover, and a toy (whatever essentials you need for a trip to the store with a young child). Now heave that 20 pound bag onto your shoulder or carry it on your hip (with one arm) and walk to the entrance.

This still isn't the best representation of what it is like taking Evie into a store if I have to park farther out then necessary. While walking she pulls my hair, grabs my neck, loses her balance and falls backwards/sideways, and screams in the process. She is 3! I am not carrying a 6 month old. I can not stand her on the ground and tell her to hold my hand. I wish I could. Yes, she has a wheelchair (64lbs). Yes, I could take it out of the back of the van and place her in it. If you've ever tried to grocery shop with a wheelchair then you know that this comes with its own set of hurdles to jump. It is not practical. If you want to get a taste of what that is like take a stroller into the grocery and try to maneuver it and a shopping cart.

If you see someone illegally parking in a disabled spot or using a placard illegally, you can help become a part of the solution. Don't be silent. If you have a smart phone download the Parking Mobility app. It generates a report that goes directly to the town or city to notify them that there is a problem. I do not recommend you confront the driver directly (yes, I know how tempting it is). Ever!

Please stop abusing disabled parking and permits. I beg you. The majority of us have them out of absolute necessity. We don't want to park there. I would rather be able to park anywhere else, but there.

Sunday, February 2, 2014

"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!

video

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!

Thursday, January 23, 2014

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...