The girl…

Soft, fragile fingers on a miniature hand gracefully touch the tip of my nose, pat my lips, and rest on my cheeks. An ever so sweet exploration, sign of affection, her way to communicate and show content.

Words are hard to find, hard to form for the girl with little hands, little toes, button nose. But it will happen one day. Her voice sometimes finds her, a babble emerges. She can cry, she can scream, and sometimes she can laugh and even sing. But when her voice cannot form the words her peers are expressing, when she has no way to clearly state what she feels, what she needs, what she wants…. the girl’s hands speak for her, let her be known.

Eliora CHOA BW 2
She’s angry, upset, why will no one hold her? She fists her hands, slams them down, releasing her frustration on the couch cushion where she sits.

She’s hungry, she’s parched, longing for her brother’s mouth-watering treats and juice-filled cup. Her seemingly fragile hands suddenly show the strength of ten thousand toddlers as she snatches his straw or snack bag away. Then, as an element of surprise, she sticks a cracker in her tiny mouth and smiles a big smile to show us she can do it herself.
Eliora eating

She’s tired, exhausted from a long day of snuggles and play. Her hands let us know by rubbing her eyes… and nose, and cheeks, sometimes the hair.

Oh, the hair. Headbands, hair clips, elastic ties, velcro… nothing will tame the beast that is her curly, wispy, perpetually tangled hair. The ringlets frame her face, kiss her eyes, and she wears them proudly. Accessories are not always welcome, swiftly removed by lightening-speed hand motions that knock them out of place, followed by vigorous head shaking to finish the removal process.

Rora and the train
She’s lonely, overwhelmed, unsure of her surroundings. Her once too-weak arms raise her hands up so that they can open and shut, open and shut, open and shut, beckoning someone to hold her, comfort her, give her a place to hide her sweet face.

She cannot fall asleep, is restless and fussy. Her hand finds yours and holds it tightly.

And now her hands are learning new tricks, showing us her strength, her personality. They extend outward to hand you a toy, touch your face to say hello, dump a  bag full of crumbly chips, explore the inside of a sippy cup with no lid. They give her independence, an opportunity to play without the help of others. They let her learn, examine what is around her, reach for new things. They let her interact, be a part of something else, join in on the fun. They let her play peek-a-boo, hiding her eyes – though one is usually peeking out. They are learning to let her move, resting on the wheels of a homemade chair, spinning her in half circles and making her feel accomplished.

Wheelchair Eliora

There was a time when her hands knew nothing but to stay clenched and by her side. They did not know how to help her communicate. They could not feed her, let her play, grab objects, touch her mother’s face. Her arms could not lift them and help her protest bows, nor could her arms and her hands support her sitting.

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But there are miracles. There are teams of exquisite medical professionals, prayer warriors, and proactive therapists, family members, and friends. Those who help this girl redefine spina bifida, show her that regardless of what she can or cannot do or say, she still has the world at her fingertips. Figuratively and literally.

The girl’s sweet hands tell us a story. They prove something to us all. No matter what the circumstances, no matter how things may seem, anything is possible. They teach us to celebrate the little details, to find the blessings in everything.

What will things be like for the girl, the one who was purposefully chosen to have a neural tube defect? Well, it will be wonderful. It will be fulfilling. It will be anything she wants it to be.

Eliora w sunglasses

Oh, this girl. Eliora is the girl with a smile on her face, the one who loves pasta with sauce, the one who touches my nose, my lips, my cheeks to tell me she loves me. That is all.

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Stars with Scars

Is it strange… that I love Eliora’s scar? There’s something beautiful about it, but maybe I see it that way because I’m her mother.
ScarI also love her crazy, frizzy, impossible-to-brush hair. And the way she chews food. It makes anything look delicious and worth trying. Both of my children bring me so much joy, fulfillment, purpose. That’s not to say that I don’t have my moments… the ones where I have to momentarily leave the screaming party, sit in the bathroom for 10 seconds and breathe. Moments where pulling my hair out sounds like a perfectly reasonable way to handle a grocery store meltdown.

I’ve gone months without writing and that’s a shame. I really love doing it, but I function in a perpetual state of tiredness. Sometimes  I just can’t find the time to sit down and write. That’s okay. It’ll happen one day.

Today, I am blowing the dust off this blog site to write about that beautiful scar, the one that’s so perfectly jagged and dimpled. Eliora’s not the only one with a scar like that. Each year, there are about 1500 babies that will have a similar scar. And there’s probably hundreds of thousands of people around the world that have at least that in common with one another.

I’ve said it a bazillion times – spina bifida differs case to case. But the one thing they all share is scars.

Benson_2012Aug-20_Web

This year we’ve formed a team to help raise money for the Walk-n-Roll of Georgia. This event serves to raise money for the Spina Bifida Association of Georgia, an organization that wears many hats. They provide support, social events, educational activities, resources, assistance, and the list goes on. We, the Bensons, have directly benefited from the myriad initiatives SBAG pursues each year. And, for that, we are thankful.

The Stars with Scars team is comprised of some of our closest SB friends, friends that we’re so grateful are in our lives. We’re here for one another to celebrate joys, for a shoulder to cry on, for a word of encouragement. We all can relate to one another, team up to find answers, vent frustrations, and cheer on our children as they redefine spina bifida on a daily basis.

So our team is coming to you, asking you to support our local Spina Bifida Association by donating any amount you feel led to give. Whether it’s $5 or $500, or you just feel called to spread the word, we are grateful. So, so grateful that you will be supporting our children, helping SBAG continue to provide resources, assistance, and SB education to individuals with SB, their families, caregivers, and any one who works with individuals with SB.

To donate on behalf of Eliora, follow this link: http://www.tinyurl.com/walknrolleliora

With great love,
Priscila

Eliora SWS CollagePhoto credit for 3 photos in the right hand column: Joanna Penny Photography. Beautiful logo by SB dad Rick Hoeye.

 

Spina Bifida Awareness, Day 31

Day 31: Farewell
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To be a bit cliche, the month of October has completely flown by.  I remember starting this endeavor and thinking to myself that there was no way I could find something to write about for each day of the month. But here we are.

My initial goal with these posts was to raise awareness in the non-SB community, those who have virtually no clue about spina bifida as I did prior to Eliora. What has really amazed me is how many people within the spina bifida community (mainly those who are expecting an SB baby) I have inadvertently reached. Right now, I am feeling so blessed, accomplished, and thankful that I followed through with this crazy idea to blog daily. It’s surreal seeing the number of views my posts receive daily, how many followers I’ve accumulated.

With that said, I’m feeling a little empty, a little sad, that this is ending. I’m not sure what to do with the blog now. Anything else seems so purposeless compared to the past 30 days. I guess I’ll just wait and see what God has in store for me, though ideas are much appreciated.
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Dear Readers and Blog Followers,

Thank you. Thank you for taking the time out of your day to read this, to comment, to send me an encouraging message. Thank you for allowing me to tell you about our wonderful baby girl and the battles she has overcome. I hope that, through this blog journey, you have grown to love Eliora at least half as much as I do.

I believe that Eliora represents spina bifida well, that she is an ideal spokesbaby for this defect. She emanates everything that many do not think is possible when you have a seemingly debilitating defect. She is the personification of joy and sunshine, always smiling and reminding us of what matters in life. She radiates strength and spreads it to those around her, showing them that spina bifida has no hold of her. She defines what it means to work hard, to live life to the fullest. She shows everyone that spina bifida is nothing to be feared. Through her life, she reminds us to appreciate the little things, to never take anything for granted, and to love one another with every ounce of our being.

I am blessed to be the mother of my children, to be witness to their fulfilling and joyful lives. I am honored that God chose me to be the mother of a child with spina bifida. While many say that she’s lucky to have parents like us, I feel that we are the lucky ones.

If I could pick one thing for everyone to take away from this blog, it would be to remember that this is the true face of spina bifida:

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For the many:

Spina bifida is known as a snowflake defect, meaning that it effects every child differently. No two SB children are ever completely the same, even if their lesion is in the EXACT same spot. Eliora’s story is just one out of so many, but one that I hope has left a lasting impression on all of you.

 

**Photos thanks to the wonderful Crystal James of Tiny Heart Studios.**

 

Spina Bifida Awareness, Day 30

Day 30: Fluff
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Yes, you read that correctly. Today is about fluff, or more commonly known as cloth diapers.

 Here are the cold hard facts, folks: Kids with SB might have to use diapers for a LONG time. The traditional concept of potty-learning gets thrown out the window and new ideas of mainstreaming are explored. Mainstreaming as in being able to hang with the rest without wetting or soiling yourself.

It’s not funny, there are no jokes here. If you have ever wet your pants in front of your friends as a child, or even in the confines of your own home, you know how embarrassing it can be. Luckily, there are solutions for individuals with bladder/bowel incontinence and some of those solutions include wearing absorbent materials in your underwear. For some children, it means wearing cloth trainers that have absorbent layers along with a layer of laminated fabric (like PUL), but that look exactly like underwear. Cloth trainers are actually pretty awesome.

We cloth diaper. It’s something we started when Asher was almost a year old. I didn’t really know much about it before then, no one ever shared any information with me, I even talked bad about cloth diapering your baby. Ew, poopy diapers getting washed and reused. 

In all truthfulness, it all boiled down to money. It wasn’t the cancer-causing chemicals in disposables, it wasn’t the disgustingly large amounts of trash, it wasn’t about being “green”.

My mother-in-law, Karla, got excited about the idea and gifted us a ton of diapers. Blessed!

I’ll be candid for a moment.

BJ lost his job months before we were surprised with a pregnancy – Asher. We were young and unprepared, no savings, and severely struggling financially. We went from living in a condo just outside of Altanta to moving into my sister’s garage apartment in good ol’ Acworth because we just couldn’t afford our mortgage. We had fallen behind on bills, paying for things using credit cards, it just got real ugly for us.

And we’ve been working hard to get ourselves out of that “ugly”. We were surprised by Eliora as well, not having planned to have another baby quite yet. The idea of being able to afford to feed, diaper, and clothe two children was overwhelming. Diapers for Asher were already costing us upwards of $70 per month, money that could have been used on better food or paying bills.

Then we learned that Eliora may have bladder/bowel issues that could result in more frequent changes or diapers for a longer period of time. More diapers = more money.

The little lady in her fluff at a recent SB clinic.

I was nannying for a family with two little boys, one of which had been cloth diapered. Their mama had mentioned it to me a bit, sparked my interest, and that’s when I began doing research. And to be honest, overwhelming does not even begin to describe the amounts of cloth diaper information found on the internet. There was so much information, so much contradicting information, so many different types of diapers, that I just wasn’t sure if I was really going to do this.

But then I evaluated the savings. I could buy a stash of one-size diapers for TWO kids for less than $400 and I would never need to throw money away in diapers again. Ever. Instead of spending more than $100 per month on diapering two children, I could spend… nothing! I could put that money toward feeding Asher healthier food. I could put that money toward catching up on our mortgage. The possibilities were endless. That made it worth it to submerse myself in the world of cloth diapers.

There is a learning curve with cloth diapers, I won’t lie. You have to learn to care for them properly so that they’ll last you through many babies. But it is not impossible.

When I decided to take the plunge, the mama of the boys I was watching gifted me her son’s stash of diapers. With that, we were able to begin part time cloth diapering Asher and then build up our stash to eventually full time cloth diaper him.

But back to SB… The system they use in the NICU for cathing babies involves a lot of diaper waste. That, right there, is an understatement. Eliora was on a changing schedule of every 4 hours. Every 4 hours, they would cath her and drain the urine into a new diaper, which meant that, at every change, two diapers were going in the trash. One diaper that was barely used, and one diaper that caught her urine.

I understand why they have to do it that way. They needed to measure her urine output, meaning they had to weigh the urine diaper at every change and record it. But going through two diapers every change is something that I could not fathom doing at home.

Our solution? Cloth diaper and drain the urine into a cup (that we wash and reuse). Even if we could afford disposables, it would be such a waste to use them on Eliora. She doesn’t wet the diaper anymore (since she’s on Ditropan and gets cathed) and sometimes she barely soils it. I would be throwing away barely used diapers when there are families out there that are so poor that they have to REUSE disposable diapers. Reuse them! (I need to rein myself in a bit since I am a bit passionate about this particular subject)

The diaper situation for SB children can get expensive. With that said, there are times when insurance will pay for diapers, but this may not happen until after the child is 3 years old. For some people, this may just be based on income, while for others it just depends on their insurance. For those who do not receive assistance from insurance, diapers can be a huge financial burden. Even for families who do not have a child with special needs.

Right now, cloth diapering is what’s working for us, what is working for Eliora. I am thankful to have a solution to her diapering needs that also allows us to reallocate that money to something like food and bills. 

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For the many:

Interested in cloth diapers? Here are some of the brands we use, but keep in mind that I don’t usually pay retail price. I scour the swap boards and pre-loved diapers.

bumGenius Freetime

bumGenius 4.0 One-Size

Flip Cover System

FuzziBunz (not my favorite)

Soon, I would like to switch our stash over to hybrid fitteds and covers. Muah-ha-ha, I just gave you something to research.

Spina Bifida Awareness, Day 29

Day 29: Babywearing
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I wear my children. Some people accessorize with dogs in purses, I accessorize with kids in carriers…

Okay, seriously. This is something that didn’t start with Asher, but instead came about a bit after learning Eliora had SB. My sister-in-law, Marianne, introduced the idea to me and shared a blog with me about a woman who wears her 11-year old daughter who has spina bifida. I was instantly inspired.

To be honest, I was one of those people who never liked the idea of babywearing. I had tried the Snugli with Asher, but that was extremely uncomfortable for me and didn’t look any more comfortable for Asher. I quit using it after a while and Asher just became a stroller baby. I had always paired ideas of spoiled children and late walkers with the concept of babywearing, so I didn’t pursue the concept any further.

Once Marianne started sharing more information on the subject, suggesting that it might be ideal for Eliora, I opened my mind to babywearing again.

Here’s the thing – as I’ve mentioned before, you just don’t know how SB will affect your baby until they are born. You may have somewhat of an idea, based on the location of their lesion, but there are still so many unknowns. I had to consider that Eliora might have healthy physical development, that she would be born without any visible deformities or issues. I also had to consider that she might have hip dysplasia, clubbed feet, muscle tightness, muscle weakness, etc.

While there’s nothing wrong with pushing her around in a stroller, the idea didn’t give me the warm-fuzzies because 1) bumpy stroller rides don’t sound ideal for babies with multiple surgery sites (I mean, seriously, car rides after my c-section were a nightmare), 2) people would feel more comfortable with approaching/touching the baby (I don’t know why people feel like they need to touch cute babies), and 3) strollers seemed to lack some level of closeness between parent and child (not something I was keen on since I wouldn’t be as close to her as I would like during her hospital stay).

The idea of using more common carriers, like a Baby Bjorn and Snugli, was also a no-go for me since I had such a bad experience using one with Asher. These carriers also have a narrow seat, leaving babies legs to dangle and have no support. They are not unsafe carriers and there is no research to prove that they cause problems,  but I knew that it most certainly would not be a good fit for my daughter who could potentially have developmental problems in her lower extremities.

As I started researching (and harassing Marianne with questions) about alternative carrier options, I felt like babywearing was something that I not only wanted to do with Eliora, but had to do. There were many options (ring slings (which my sister loved using with her kids), mei tais, woven wraps, soft-structured carriers, and many more), but I felt that a woven wrap would be the best option for Eliora.

What the heck is a woven wrap? Excellent question. It’s a long piece of woven fabric (the way in which they are weaved provides immense amount of support for baby’s weight) that you can wrap around you and baby in a million-and-one different ways. You can position their bodies so that they are cradled (safely, with open airway), seated on your back, tummy-to-tummy on your front, resting on your hip, or you can use it to carry two babies at once (crazy, but awesome).

I felt confident that I could position Eliora in any way that would promote healthy physical development for her body.

One of Eliora’s first times in the wrap.

Marianne gifted me with my first wrap, a Girasol Northern Lights (she let me pick it out!). I put Eliora in it as soon as I was allowed to, which was shortly after she came home from the NICU.

Not only could I position her so that her hips turned inward (because they turn too far out), we also had a level of closeness she had never experienced before, that we lacked during her hospital stay. Another perk? It made chasing around after Asher way easier.

Babywearing also made it easier to comfort her before and after surgeries, keep her close, help her relax. I could provide head support and body support, something she really needed help with because her muscles needed strengthening.

Asher was going through a little bit of a rough time after Eliora’s birth. There were a lot of abrupt changes – staying with people he wasn’t used to, rarely seeing mommy, changes in his schedule, etc. We bought a soft-structured carrier for him, an Action Baby Carrier, and wearing him made a huge positive impact on our relationship. He could be close to me, comforted, while also being involved in what I was doing. We still wear him today – he’s 2 years old, 27 pounds.

{Check out my guest post on the Atlanta BabyWearers blog here.}

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For the many:

Babywearing is certainly a lifestyle change, but it’s such a good one. I absolutely love it, perhaps a little too much. I’m the lady that gets the weird looks at the store… I bet you can see why.

Tandem wearing is fun and turns a 45 minute store trip filled with tantrums into a 15 minute pleasant experience for all.

But today’s FTM is for the new mamas… Babywearing is such a wonderful parenting tool. There are many carriers for all budgets and lifestyles. I strongly encourage wearing your little ones, no matter the carrier style, brand, or type.  And for the SB mamas, if you haven’t considered babywearing, it might be something worth trying out with your child. I highly recommend a woven wrap since it can provide versatility and support for both you and baby. My next favorite is a mei tai. You can use the straps to add support where your baby needs it most.

Oh, and babywearing definitely does not cause spoiled children and late walkers.

Spina Bifida Awareness, Day 28

Day 28: Progress
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What’s sad (for lack of a better word) about having a differently-abled child is how much focus there is on what they cannot do. What they CAN do is even phrased negatively at times, with words like “but” and “however” thrown in there to reiterate the fact that they’re not doing something perfectly right.

We, as parents, fight against that and try to bring more light to their accomplishments, to their strengths, to their shining personalities. I can’t be so general, however, and must say that there are some healthcare professionals, therapists, and social workers that also strive to focus on the positive.

I was recently told that life is about “progress, not perfection” and that is most certainly true when it comes to SB (though, the phrase was initially used in a different context). While it’s important to promote healthy development, like encouraging Eliora to use her muscles when holding her head up instead of resting it on her neck, we need to remember that she’s progressing, that she’s actually trying to hold her head up instead of letting it fall back. Progress!

In lieu of a long post, here are some fun videos of Eliora showing off her new skills, her progress. Enjoy!

Spaghetti legs no more

Eliora can sit!

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For the many:

Progress, not perfection.

Spina Bifida Awarenss, Day 27

Day 27: Impact
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I want to show you how spina bifida really affects Eliora’s day. I want you to see how present it is in her daily life, how it impacts us as a family on a daily basis.

I’ll use today as an example.

The alarm goes off, we hit snooze several times. We finally get up around 7:15 AM and begin to throw everything together so that we can head out the door by 8 AM at the latest. I don’t think we were really on the road until 9, but we tried. Sometimes drying my hair takes longer than expected.

Eliora woke up happy, hated getting her hair washed, but was stuffed in her frilly dress in no time. Asher helped collect all available pacis, including the one in Eliora’s mouth. We filled the cooler, buckled the kids in, and caravanned to Ellijay, GA.

From then on, our day went a little something like this:

Burt’s Farm was awesome. We picked out a mini pumpkin (fits in my palm) and a tiny gourd. They didn’t have a place to change diapers, however, so we cathed Eliora and changed Asher in the trunk of our car.

Part of our annual trip is having a picnic at Amicalola Falls. Unlike the previous years, it was a little chilly and a bit windy. Nonetheless beautiful.


Then we were off to Hillcrest Orchards where pig races, a petting zoo, a huge bouncy pillow, and hay rides, among other things, kept us very busy.


If you need a changing table, you’re out of luck here, too. They have one, but it’s in the only indoor bathroom they have, which means very long lines. We stood in line, however, so we could cath Eliora.

And now Eliora is fast asleep…

Sounds like a wonderful day, Priscila, but I don’t see how spina bifida impacted Eliora’s day at all.

Exactly.

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For the many:

Okay, so Eliora’s meds and catheterization are something we do daily (multiple times a day), but it’s our norm now, so I wouldn’t call it an “impact” at all. Sure, it took some adjusting initially; however, now it’s the most least interesting thing about our day. We don’t allow those things, or spina bifida, to define Eliora. There’s a life lesson in here somewhere, folks.

Spina Bifida Awareness, Day 26

Day 26: Sight
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If you didn’t notice, I love this cross-eyed, crazy-haired squishy baby girl.

A bit of backstory:

A few months ago, we applied for Supplemental Security Income Disability Benefits. This is a needs-based program that provides Eliora with a monthly check to help pay for her expenses, like gas to and from CHOA and physical therapy toys. This is something that is extremely difficult to qualify for since it has very low income limits and asset limits (if you have two cars, you may  not qualify).

Medical expenses for chronic conditions can definitely add up, so this is a huge help to those who qualify. Those who make over the income limit may still need financial help meeting their child’s medical needs, so there are other options for them as well (in Georgia, this is called the Katie Beckett Waiver).

The application process is slightly confusing, but luckily there are many non-profit organizations that help families fill out the hoards of paperwork. I spent several hours, on and off, working closely with someone that made sure to get every last detail regarding our financial situation, Eliora’s diagnosis, and Eliora’s medical history. The medical history didn’t need to be too accurate since they were going to contact every specialist, doctor, and therapist that works with Eliora to get them to fill out an evaluation regarding her medical needs.

They even offer a monetary incentive to the care providers if they return the paper work within 15 days of receipt. Pretty sweet deal that obviously works because Eliora’s then-therapist decided to do a quick evaluation on Eliora during one of her PT sessions.

We learned some new not-so-pleasant things about Eliora’s progress during that eval. I guess I hadn’t really noticed any of Eliora’s motor delays, especially since she was a pretty sleepy baby most of her early months. I didn’t worry too much about the fact that she wasn’t grabbing toys, reaching out for anything, tracking objects, or interacting with toys. I mean, really, all she did was sleep, eat, and poop.

When her therapist decided to do a short evaluation so she could send an updated report to the SSI office, I was looking forward to it. I had expected that Eliora wouldn’t be on the same page as many babies her age, and I wasn’t (and still am not) bothered by that.

It was during the evaluation that we discovered a few important things:

1. Eliora can follow my face only if I’m making noise.

2. Eliora will not reach for anything.

3. Eliora cannot grasp a toy for longer than 5 seconds.

4. Eliora doesn’t notice if something is right in front of her.

Eliora’s gross motor skills were also a bit more delayed than expected, but nothing to cause any alarm. The aforementioned points, however, meant that Eliora had significant fine motor skill delays (which are really hard to detect in infants anyway) and visual motor integration delays – she either 1) couldn’t physically  move her head to track an object or 2) couldn’t see well enough to track an object.

It was obvious she was relying heavily on sound. So what do we do? Her therapist said she would benefit from occupational therapy to help with her fine motor skills, but that it would be hard to tell what was really going on with her visual motor integration without getting her eyes checked out.

Immediately following that PT session, I took Eliora to her pediatrician and got a referral to see the eye doc (who didn’t have availability for a month and a half!). I was excited to get the ball rolling, ready to do whatever possible to help Eliora progress. I thought she might need glasses, which for infants is ridiculously cute. Infant glasses look like super-awesome baby goggles.

Dr. Bordenca immediately noticed that Eliora had severe eye crossing. This is probably because of her hydrocephalus and low muscle tone – the muscles are just weak and she can’t keep her eyes straight.

Both eyes don’t always cross – sometimes they take turns. He checked each eye individually and determined that Eliora had great vision in each one (Yes!). Pediatric eye docs must have magical powers because I have no idea how he figured that out. He used fun brightly-colored toys that made clicks, pops, and snaps to get Eliora to do what he wanted. He utilized Disney movies, giant glass cylinders, and contraptions that I cannot even describe to you – he was so swift I didn’t get a good look.

He told me that she was probably seeing double because her eyes crossed. Made sense and made me wonder how she didn’t suffer from headaches. I can’t imagine having blurry, double vision all day long.

Dr. Bordenca noticed that she wasn’t always turning her head to track, that she was instead using the crossed eye to see across her nose, therefore eliminating the need to turn her head. He was glad we came when we did. Had we waited, she may have started favoring one eye over the other, causing the less used eye to become weak.

So what does this mean, Priscila? Well, this means that Eliora is going to have another surgery. Dr. Bordenca is going to go in, tighten her eye muscles, and hopefully that will be the end to that problem.

I cannot even begin to express how excited I am for her. She is most definitely making progress with her fine motor skills, she’s even starting to break out of her comfort zone and reaching for toys. Sure, she sometimes misses, aiming too far to one side, but she’s trying!

I believe this eye surgery will help improve her awareness of her environment, help her grow more comfortable with her surroundings, and allow her to make huge progress in therapy.

The procedure takes place next month, probably mid to late November. Keep us in your prayers!

Eliora reaching for a big, bright toy. Huge blessing!

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For the many:

Though my initial intent with this blog was to raise awareness among the non-SB community, I find that I’m writing more to the parents and soon-to-be parents of an SB baby.

But I suppose there’s a subliminal message in this post for everyone, one that speaks of optimism. At times I find myself fighting hard to show everyone that not everything that happens to Eliora is sad or negative. When I was telling family members about her upcoming procedure, I wanted them to see how this was a great thing, that we’re excited, that it’ll bring so much good to Eliora’s physical development.

So, today’s FTM is to find the silver lining in every situation, because, believe it or not, there’s one there waiting to be found.

Spina Bifida Awareness, Day 25

Day 25: Decisions
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It’s a bit overwhelming (and, in my case, slightly stress-inducing) thinking about the fact that we, as parents, are the ultimate decision makers for our children. It’s not about doing what’s best for us anymore, but what will secure healthy development and a lifetime of well-being for the little people. What we do now ripples into their future.

Well, when you put it that way, Priscila, it sounds pretty intense. That’s how my mind works, folks. But, don’t forget, it’s OK to make mistakes. Being a parent also means a series of trial and error. Just ask Asher – he was the parenting guinea pig (Eliora thanks him).

A myriad of choices are presented before us and we must decide, we must say yes or no. It’s all pretty subjective, however. I am confident that what I do with my children is what is ultimately best for them, for our family. Those same choices may not work for your family, may not be what you feel is best for them. I choose to cloth diaper my kids, wear them, do my best to feed them real food, and I don’t say no to the occasional McDonald’s Happy Meal. Don’t act like you don’t eat there, too.

I say yes to spanking and no to forward-facing car seats before the age of two. I say yes to praying and no to Nickelodeon. Some of these decisions were no-brainers while others took some more effort. In the case of Eliora’s medical care and therapy, the decisions definitely take a lot more effort (and praying).

Sometimes I wish there was a Spina Bifida handbook with step-by-step instructions. If you’re doctor says this, but your therapist says this, then do this. Unfortunately, it’s extremely common for the specialists and therapists to disagree with treatments, medical equipment, whatever, and for you to be left slightly confused, with some big decisions to make. That is exactly what happened to us.

Every few months, I take Eliora to CHOA for Spina Bifida Clinic (or just “clinic”). Instead of going to individual appointments to see each specialist, we go to clinic where we sit in a room and the doctors take turns seeing us. Whoever thought of this was a genius and they need a high five. We live an hour from the hospital, so clinic saves us a lot of gas and time.

Dr. Vova is the Physiatry (Rehab) doctor, so his main focus is how Eliora moves. He had a med student following him around that day, watching his every move, taking notes, so the doc was definitely on his best behavior. Not a very tall man, but slightly intimidating nonetheless. He kept a focused, serious look on face except when interacting with Eliora. That’s when his love for children really showed. His pearly-white smile would appear, speaking to her in a sweet, soft whisper, making her smile back at him. He asked me questions regarding her current therapy treatments, her mobility, and how I felt she was progressing, making sure to focus on any concerns I had.

Eliora was showing off her skills at SB Clinic.

He was alarmed, taken aback, that Eliora was only receiving an hour of physical therapy twice per month. He felt that her diagnosis alone should have called for at least weekly visits. Her gross motor delays should have called for visits twice per week. He was concerned about her fine motor and visual delays and recommended that she start occupational therapy once per week. He addressed some of my worries over giving her solid foods (because she can’t even sit up and still occasionally chokes on breastmilk), so he ordered a feeding evaluation. He then dropped a bomb on me – he wanted Eliora to move out of Babies Can’t Wait (the state early intervention program) and into private therapy (this involves taking her to a facility).

Wow. I wasn’t expecting any of this when I went to clinic that day. Eliora’s current physical therapist had recently done a quick evaluation and determined that she did have some major fine motor delays (not opening her hands, not reaching for toys, not grasping toys for longer than 5 seconds), but she was waiting until the next evaluation to see about adding occupational therapy (OT). She had mentioned that Eliora was too young for more frequent therapy, but that eventually we would move into weekly visits.

I was really confused. I was already starting to have some doubts about her current therapy situation. I wasn’t sure I was in complete agreement with her therapist’s approach, her philosophies. Now Dr. Vova had added on to those doubts, making me question why her therapist had not wanted to do more frequent visits, why she wanted to wait on adding OT when she had said herself that Eliora had “major” fine motor delays. So I did what I thought was best – I talked to her.

Cousin Derek (5) doing some exercises with Eliora.

In a nutshell, she got upset. I didn’t tell her EVERYTHING Dr. Vova had mentioned, just that he wrote a prescription for PT 2x per week, OT 1x per week, and a feeding evaluation. She made sure to tell me that there are children worse than Eliora who don’t even get that much PT, that there is no scientific proof that more therapy really helps, that our insurance would never pay for that, and that she was going to up her sessions to weekly anyway.

That didn’t make me feel any better about the situation. I should really listen to what she says, right? After all, this woman was the one that had seen and worked with Eliora the most, unlike Dr. Vova who had never met her before until the day of clinic.

I decided to think about things a little more. I took a few days, I did some research, I talked to folks in my SB support groups. Many of them recommended doing both, many told me to stay with BCW because it would save me gas and the headache of driving around with 2 kids, many told me to take her somewhere – that it made all the difference in their children. I considered staying with BCW, but switching therapists. However, I was advised to try to talk things out with our current therapist, really let her know what we want, and then see where it goes. It was excellent advice, so that’s what I did.

Before meeting for an evaluation with our current PT, I set up some evaluations at a facility out in Canton, GA (about 40 minutes from us, but the place was highly recommended by therapists at CHOA). I felt comfortable knowing that I had those lined up in case things didn’t go well with Eliora’s current PT.

And things didn’t go well. I talked to them (the entourage that came for the eval), told them that I really wanted her to have therapy more frequently, and they said okay. Sure, I got what I wanted, but then the therapist decided to keep talking. She said that she would be surprised if Eliora’s insurance approved this, that she’ll try, but she would be floored if they approved because there are children that need therapy more than Eliora (that she would love to see more often) that don’t get approved. She said that she didn’t mind coming more often because it’s more pay for her – that is if insurance even considers this absurd request. She said that it may not help, but it’s worth a shot. Hey, if anything, it just means that I don’t have to do the exercises with Eliora that day because she’ll do it with her.

She’s not a bad therapist, don’t get me wrong. We had really grown to love her. We just didn’t see eye-to-eye. I realized at that moment that I really wanted someone who was as determined about doing whatever possible to help Eliora as I was, that wouldn’t let the condition of other children keep her from getting all the help she needs.

I realized I didn’t care about driving far for therapy. The gas and time are worth it if it is what is best for Eliora. I would find a way to make it work, to bring Asher with me if I had to. So, I broke up with Babies Can’t Wait. I was comfortable knowing that if things didn’t work out elsewhere, we could always come back and try BCW again under a different therapist.

We went to the evaluations at a facility and it was wonderful. They acknowledged all of her delays, but also really focused on everything Eliora CAN do. They decided that PT and OT twice per week, at least for the next 6 months, is best in order to really jump start Eliora’s progress. They reassured me that Eliora really needed this and that her insurance would most likely approve everything due to necessity, and they were right. Her insurance approved everything in a snap.

We love Ms. Katie and Ms. Laura at In Harmony Pediatric Therapy. Yes, we have four therapy sessions per week, but it’s worth it. Eliora is making progress and is having a great time (she’s always smiling during her sessions). Her therapists talk me through everything the entire session, teach me things I can do at home (BCW taught me things as well), they break down the activities and explain specific skills they are working on, and they are always encouraging and uplifting. They praise Eliora for everything she is doing, they encourage her to reach new heights, and they radiate optimism. There were things I didn’t know Eliora could do, that I never thought to try with her, until we switched to In Harmony.

I’ll be honest, for a fleeting moment I forgot that God already has a plan for us, that I shouldn’t worry. I should be diligent in my parenting duties, pray, and have faith. No matter how big or small the decision is, He’s got it under control.


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For the many:

Private therapy is what is best for Eliora right now. Would she have been alright staying with BCW? Maybe. But there would have been this lingering “what if”. I had to evaluate the situation and weigh the pros/cons of my choices. I am confident in the decision I made.

So pray about it, be confident in the fact that you are doing what’s best for your children. Do your due diligence as a parent, do your homework, and reap the benefits.

Spina Bifida Awareness, Day 24

Day 24: Guest Blog – Daddy
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Travel. Although it offers seeing new places, a change of scenery from the office, and company paid meals, traveling for work means missing my family. October and November are our busiest conference months, and I am currently on my 2nd of 4 out-of-state trips this conference season.

My 4 trips this year are nothing in comparison to my being gone every other week this time last year. Last year, however, had the added stresses and challenges of learning Eliora had spina bifida while missing my nearly 1-year-old Asher and Priscila. As you’ve read in previous posts, we learned of Eliora’s diagnosis on October 13, 2011. On October 17th, the same day as Priscila’s amniocentesis, I was on a plane en route to Minneapolis, Minnesota. My company offered to find a replacement for me, but non-refundable airfare had already been purchased and Priscila and I felt bad if we were to cause the company extra expenses that were not completely necessary.

My booth at the Minnesota conference.
<<Shameless American Book Company plug>>

I felt bad that I couldn’t be there with Priscila to support her and comfort her as they stuck her with what I imagine was a foot-long needle. She assured me that it was OK to miss the appointment, that her mom and dad would be there with her and to help with Asher.

I distinctly remember watching YouTube videos from Children’s Hospital of Philadelphia (CHOP) on their fetal surgery program while on the phone with Priscila from my hotel room. I remember how hard it was to not be there with her as we evaluated and discussed different hospital’s programs. I am thankful that I was not traveling (or scheduled to travel) during the months of March – May, 2012 in which Eliora had her 5 operations.

Fast forward 12 months. I’m sitting in a hotel room in Shreveport, Louisiana writing this blog. I have a 24-month-old, a 7-month-old and a 302-month-old waiting for me at home who I love and miss so much while I’m away. My trips this year may not be as stressful and emotional as last year, but it stinks being away from the cute smiles and laughter from Eliora, the ‘I wuv you’s from Asher and the continuous bickering/nagging complete, non-lonely feeling (did I just try to define love? – SOOO not good with words) of being with my wife.

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For the many: This is Priscila’s deal – I got nothing ;)