Arianna's Magic Boots - Children's Book Review/Giveaway

I recently reviewed a pair of AFO (ankle-foot orthosis)s for baby dolls and expressed how important representation is for children. I'm so pleased to discuss another item that helps my daughter see herself in the things she loves. This time, it's a book!

Both of my children each have bookshelves with hundreds of books between them.

Reading is so special in our house and I'm always looking for new stories to share with them!

Arianna's Magic Boots by Karen A. Gasperini is a heartwarming story about a young girl who uses her imagination, and her AFO's, to go on a wonderful adventure!

The character in the story is based on both the author herself as well as her daughter Arianna, who both have a few disabilities including Clubfoot.

My three year old, Penelope also has clubfeet so I love showing her that she's not alone.

The magical aspect of this book is too sweet.

Arianna starts her day just as any other kid. She has breakfast and gets dressed.

Then she goes off to her Physical Therapy appointment, which is very relatable for many children with disabilities.

While in the doctor's office, she notices a new colorful poster of the jungle. Using her amazing imagination, Arianna stomps her feet three times and says “Away We Go!” which is what initiates her adventures.

We had so much fun reading this and following Arianna and a slew of adorable animals on this journey.

I am a huge fan of toys and books that make Penny feel like her boots or braces are not the enemy! While she no longer wears show inserts, she still related this to her night time brace.

That said, I believe this book is for all children, not just those who have experience with AFOs or other hardware.

While I find it incredibly important that children have books with characters they identify with, I also find it just as important that my children are reading about diversity and learning about the people who are different than them as well.

Arianna's Magic Boots goes a long way toward gently explaining to fully ablebodied children some of the experiences their friends or classmates might be having, and can be a launchpad to a good discussion.

Arianna's Magic Boots is available on Amazon for $10.99 in paperback or for $9.99 on Kindle, and it is available at not cost via  KindleUnlimited!

Keep an eye on their Facebook account for an upcoming interview the authors have with Rhode Island Channel 12 WPRI news.

I'm so excited to know that Arianna has more adventures in store for us! Volume Two, currently in production, will be about underwater exploring!

Coming Soon!

Karen A. Gasperini is giving away one SIGNED print copy of Arianna's Magic Boots to one of our readers worldwide - read on to see how you can enter to win!  I think you'll find this is a good addition to any child's bookshelf.

 https://www.facebook.com/Ariannasmagicboots/

 Availabe on Amazon

One winner will receive a signed paperback copy of Arianna's Magic Boots, by Karen A. Gasperini, valued at $10.99.

To enter the giveaway, please leave a comment in this entry as instructed by the Giveaway Tools Entry Form below. This will open up additional optional entries to increase your odds of winning. (If you don't leave a comment, any additional entries will be void.)

This giveaway is open WORLD-WIDE and will end just before midnight ET on 1/27. 

The winner will be notified by email 24 to 48 hours after the end of the giveaway by email. In order to claim the giveaway prize, the winner will need to respond within 24 hours of notification, or an alternate winner will be selected.

Entry-Form

Penelope's Clubfoot Journey / Shishka Bob Design Review

I'm am so excited to write a short update on Penelope's Clubfoot journey that isn't filled with dread and relapse and casting, and tears! (My last one is here, and includes links to the previous posts detailing her progress.)

Where we last left off, Penny was experiencing her second relapse and 3 millionth set of casts (or so it felt). It took her about a month after those 2 weeks of full leg plaster casts to fully regain her strength and confidence in her legs again.

But otherwise, she was doing great! She was wearing her brace all through the night without complaint, which was the stuff of our dreams before then. Her following checkup should have been around July or August, but for several reasons, the date slipped. First, we got really busy - my husband left for a while for career training stuff, for example.

When we finally got around to making the appointment, they were so booked! They finally got us in this week (early November for future readers). Good timing as Penny had recently started complaining about her boots again, often in the middle of the night.

I was so nervous. I honestly thought her feet looked fine, but I didn't expect casts last time, so I was afraid to put my guard down.

We only waited about 30 minutes to see the doctor, which was crazy because that waiting room usually seats us for about 3+ hours every visit.

Unlike last time, Penelope was perky and personable and did everything the doctor asked like stretched her feet without assistance in whatever direction he asked and got down and walked back and forth so he could watch how her feet lay.

They agreed her boots were a bit snug and it was time to go a size up, answering why she was beginning to reject them through the night.

As expected, he pointed out her right food as slightly imperfect (which I always can notice), but still well within the realm of what he considers corrected.

My only surprise of the appointment was that he expressed only wearing the brace until the age of 4, when we have always been told 5. Granted he's only our second specialist, but it seems to be common practice among the forums I follow as well.

He basically said it didn't create that much better success to extend beyond 4, and that I was was awfully “ambitious” to expect a child that age to still cooperate. So... we'll see?

All in all, it was a good visit, and I'm feeling more confident that we'll all get through this successfully.

Ok, so now onto some hella cool stuff!!

Sometime last year, I came across Shishka Bob Design – an amazing Etsy shop that makes leg braces for baby dolls.

For some, this may seem silly. For parents that have children that deal with such aids, these are absolutely magical. Representation can be a huge confidence boost for kids that may be feeling different than their peers. Just as any parent may choose dolls that share the same eye,hair color or ethnicity as their children, Shishka Bob Designs takes it to another level in celebrating and humanizing wonderful differences.

Bob was inspired to craft doll braces after watching a viral video of a young girl receiving a doll with a prosthetic leg to match her own. He made a set for a friend with children in orthotic braces.

Once word of mouth spread, he received many requests, thus starting him on this venture. In his early days he was using a homemade vacuum machine and heating the plastic in his oven at home.

That's dedication!

Today, thanks to hard work, many reworks on the design, and a more than met Kickstarter campaign he has helped bring smiles to over 400 children!

Shishka Bob Designs makes SMO (ankle length), AFO (full calf length) and KAFO (above the knee length) braces that fit standard American girl or similar (18in dolls), AG Wellie Wishers or similar (14in dolls) and AG Bitty Babies or similar size.

Prices vary from $22.50 for SMO/AFO for a SINGLE leg brace, $32.50 for KAFO single leg, $44.95 for SMO/AFO double leg and $64.95 for a KAFO double leg. I think these prices are more than fair considering how much time and love goes into each pair.

I was so grateful to receive a pair for Penelope. On top of all the awesome already mentioned -- Shiska Bob Designs lets you choose from solid colors or custom patterns.

Just by providing a picture of Penny's AFOs, we received a perfectly matching set for her baby!

While Penny no longer has to wear her AFOs, she still remembers them well and knows it's all part of her Clubfoot Journey. We keep them on display so she recognized the pattern immediately and even asked to wear them again for a awhile to play with her doll.

Our pair came in the mail in under 3 weeks, but it is important to keep in mind that Bob does this on the side and has a full time job that keeps him busy as well. Please allow up to 6 weeks before item may be ready to ship.

After November 15, Shishka Bob Designs Etsy shop will be closed through Christmas, so if you'd like to order one for Christmas, do so today!  If you love a child undergoing treatment involving orthotics, this promises to be a gift they will cherish forever.

https://www.etsy.com/shop/ShishkaBobDesign

https://www.facebook.com/shishkabobdesign/

Penelope's Clubfoot Update: Navigating the Challenge While Overseas

I'm way overdue on an update for my daughter Penelope's clubfoot progress. For a bit of recall, she was born with bilateral clubfoot, or talipes equinovarus.

The last I left off, was when she had a relapse around 10 months old. She was recasted for two sets, and looked great after!

We moved to Germany in november of 2015 and although we are American military and there is a clinic on post, all specialties are off post in the economy (in other words - German doctors). We spent many months jumping through hoops to make the appointment we needed.

We are on EFMP (the Exceptional Family Member Program) and had already locked down our specialist before we'd arrived. However, communication was a bit hit and miss, and it took us quite some time to see him.

We finally did about 4-5 months after moving here. It was a good visit but they did say her dorsiflection was stiffer than they like. Dorsiflection is the range of motion and ability for toes to bend toward the ankle.

Then, around 18 months, in an accidental fall, she broke her left leg - a crack right on her femur right above her knee. This resulted in a 10 days cast and further delay in her physical milestones (such as walking). Not to mention, it wasn't a 'clubfoot cast' so she was unable to wear her brace for that period of time. I truly think this is where we began to go downhill again.

She finally started walking at 21 months.

A few months after her leg had been casted, we saw her specialist again. At our second appointment, he commented that if her dorsiflection got any worse he may suggest casts, like she'd worn when she was younger.

Unfortunately, it was another 6 months until we could see him again! (Our doctor in the States had had much more frequent check ups.)

In the meantime, our pediatrician recommended in-home physical therapy. The therapist came to our home twice and recommended AFO, which are full time shoe inserts meant to mimic the effects of her brace.

I hated the idea of making her wear shoes/boots 24/7, but attempted ot do as recommended.

Once we had the AFO in hand, we spent a lot of money and energy buying her shoes after shoes to fit them properly, and never fully succeeded.

Unfortunately, the visiting physical therapist became very flaky. We never achieved a good working relationship, or any consistency in communication, and eventually she became too difficult to work with.

Finally, February rolled around and it was time to see our specialist, Dr. Wurth again. I always dread these checkups, especially when they are spaced so far apart, but I didn't really expect the news we got.

Penny spent hours in the waiting room (yes, hours), singing Doc Mcstuffins songs about feeling better after the doctor.

She babbled about letting the doctor see her feet and being a brave girl.

But as soon as we went in his office, all bets were off.

She screamed, refused to get down and show him how she walked, and was very uncooperative. Her natural resting position was mostly all they had to go on, as well as unimproved range of motion.

They really wanted to see if her toes curve in when she walks but they were unable to assess that. In the end, we were informed she would be recasted that same day.

I'm not so sure Penny remembers any of her previous casts and really acted like she was in a torture chamber. It was just awful to have to witness!

She spent the first 3 days or so sadly asking us if she could get down and run, and we'd have to tell her she couldn't. She spend most of the first week on the couch, watching TV.

We were also very fortunate to have a fantastic community and managed to borrow a few things for her that made our lives easier. Both from virtual strangers, we got her a papasan chair, that comfortably rested her casts, as well as a open seat high chair as hers had hard frame leg holes that were were difficult with her bend leg casts.

We reiterated to her over and over that at the end of the week these casts would come off BUT another set were then going on. The way she repeated it, I don't think she quite understood that second part, which made the next appointment just as sad and difficult.

One thing that made removing the first set challenging is that we never had plaster casts before! All her previous sets were soft roll they would just unravel.

We opted out of using the saw, as it scared me.

So, they set us up with a bucket of water and a huge roll of paper towels. We had to soak each towel and wrap them around her casts. I felt so badly about it as it was pretty cold in there. After about 40 minutes, they came back and told us to start over, and do it again. UGH!

Finally her cast of soft enough to cut off using these industrial scissor things. They had to shove the shaft of the scissors down the leg of her cast, and tug pretty roughly and she complained of pain the entire time. She kept saying he was going to cut her foot off and that she was 'afraid to see my leg!' it was heartbreaking.

Once she had the new set of casts on, she was ok. She was just happy they weren't touching her anymore. When we got home she was in much better spirits week two. She often got down on the floor to play with her big sister and kept saying she couldn't wait until she could run around in circles again.

When the day of the second cast removal finally came, we were all so excited! This time we opted for the saw, which was much faster, but incredibly loud. She still cried and was scared but didn't complain of any pain this time.

On a plus side her feet look SO straight!!

What we forgot to anticipate was how sore her legs would be, having been locked in the same position for two weeks. Once we got her home we figured it might be a day or two before she would be back to her old self. She could only move around in very small steps and only holding hands or furniture.

Now we are almost 2 weeks out, and she is finally running around just as before. Hopefully we can get back into the swing of potty training, which was interrupted by this relapse!


She continues to wear her brace every night, for about 12hrs a day.

At just 29 months of age she has endured 25 casts total, 2 surgeries and hundreds of hours in an awkward brace. Even she will happily tell you she is a 'Warrior Princess"

Here's to hoping that was our last bump in the road along this journey!

REVIEW & GIVEAWAY: Trust Your Melody by Lana Mayes

A couple weeks back, the topic of RCH came up in a discussion on one of my Clubfoot support pages on Facebook. I believe it was concerning my review on the bar covers for the brace. A fellow mom, Lana Mayes, inquired about where to find the site. After a little while, she returned and asked if she could send me a copy of a book she had written. She decribed it as a parenting book that talks about her struggles with numerous aspects, Clubfoot being one of them.

I had yet to read a single adult book (there are various children’s book on the subject) concerning clubfoot, so I was very intrigued to dive into this one! As I was scheduled to move in a weeks time and the book would be sent from Australia, I had her ship it to my next stop. I couldn’t wait for it to arrive!

About a week into my visit with my mom, it came in a the mail. It was beautifully wrapped, and included a delicious chocolate, bookmark and business card.

I decided to save the reading for the upcoming 9 hour flight to Germany I had coming up –but happily enjoyed the chocolate treat with more promptness.

Once we  were settled in our airline seats, (and kids magically asleep!). I  pulled out my copy of Trust Your Melody by Lana Mayes.

The first thing I noticed was how somber the cartoon people on the front cover appeared. The older boy (sporting his clubfoot brace) looks almost angry, the younger baby has visible tears running down his sad face, and the mom…she looks done.

My one year old loves the cover! I don’t know if it’s the bright hot pink background that draws her in, or the cartoon picture (she does point to the boy in Boots and Bar just like hers and lights up) but she has stolen this book from me numerous times.

By the end of the second chapter, titled ‘Welcome to the Club’ I was in tears. I read it with my mouth hanging open, while actually nodding at the paperback in my hands. Although I’m right around 18 months past Penelope’s prenatal diagnosis, I recalled each and every feeling and thought that Lana describes. I easily could have written that chapter.

In similar fashion, we were clued in that SOMETHING was questionable, but left to wonder what the heck that meant. She tells of having to assure herself that it’s ok to grieve. That one took me awhile. There were so many people, people in my actual life, dealing with much bigger issues, but that didn’t stop my world from flipping upside down and worrying about what was to come. Clubfoot, or any other challenge that life throws you and your offspring, it is OK to grieve what you imagined, and what will never be.

After that chapter, I had to put it down. One, because I didn’t care for the crying that was taking place in a public, and quite crowded, space.. and two because I it was clear I needed to join the kids in slumber on this redeye.

A few days later, at our new 1am, I discovered the hell of jetlag. Sleep was nowhere in sight. For about 3 nights in a row, I was up until nearly 5am. In those 3 nights, I breezed through Trust Your Melody, soaking in every story. Much I could relate to, some I just wanted to reach out and hug this poor mama and thank my lucky stars that I didn’t deal with the same trials.

It took a few chapters to realize that it isn’t written in chronological order. Each chapter is a different subject matter with stories and personal recounts jam packed. I was slightly confused when her oldest Zachary, was 1 at the end of a chapter, then suddenly a few weeks old in the start of the next. Also, the book begins with her friend Melody, encouraging her to take a therapeutic journal writing class, which eventually led to Lana realizing she has stories to share, and a book that needed writing.

This friend, Melody, is not the Melody she is encouraging you to trust, of course. She is referring to the little ‘Melody’ we each have inside of us. The wisdom filled, positive voice that’s always there when we need it most.

Less than a third of the book is actually directly about clubfoot, but it’s still a large contributing factor to understanding the depths of challenge that Lana dealt with as a mother to two (under 2!)

In all honestly Clubfoot seemed like small potatoes in comparison to the Reflux issues her son Zachary also dealt with. Admittedly this wasn’t an issue I know a lot about, so I couldn’t relate as personally as I did with other concerns. That didn’t make the book any less interesting. It opened my eyes to how easy I’ve had it, and helped me appreciate things better. I will never look at a tantrum the same way now that I know how much worse it could be!

Lana is so real about every aspect surrounding her mommyhood. She gives lots of details about the tumultuous second pregnancy, with son Thomas.

I laughed, I cried, I audibly said ‘yep!’ as she described a few of the physical ailments I, too, limped through, (seriously, Symphasis Pubis Dysfunction is so awful…) all while being in complete awe of everything she was dealing with at once.

She seems to have a wonderfully loving husband, though doesn’t touch on him too much, clearly keeping the focus on her and her struggles.

Based on the cover, I wondered if she was a single mother, but when she does mention him, she speaks very highly. There is also a serene beach family photo in the back of the book.

There are two chapters I love the most. Chapter 6 ‘Broken Down Body’ goes into great detail about the bad and ugly no one likes to hear-  unless you need to be reminded that you aren’t alone. Pregnancy, labor, delivery and motherhood takes its toll, much of that is normal, but some things need medical attention. Fecal Matter Transplant- did you know that was a thing? Me neither.. now I do.

Chapter 8 ‘My Mummy Mask’ is so raw. We all wear masks, for better or worse. Very few people will ever see your completely authentic, take it or leave it, self. Moms in particular get so much pressure to perform a certain way, and do so with such a smile.

Lana says it best:

 “... by fiercely protecting my ‘privacy’ and not being honest, very few people knew how much support I needed.” 

We dwell about how no one gets it and how alone we feel, but the truth is, we don’t know what's behind everyone’s mask. Nor do we know how much better off we would be if we let people in to help us. Even if just to your medical staff, don’t keep the whole world believing your façade.

There is also a chapter about tips and tricks that she accumulated through her personal life. A bit of it is about how to deal with Reflux, but most of it is about clubfoot. I loved reading her advice. She is further in her journey than us, in fact, her boy ends his time wearing braces in just a few days!

She ends the book with a unique kind of glossary. Using words or phrases she discussed throughout the book, she gives HER definition to them - what they meant in conjunction with her life.

It is a nice quick read with just 127 pages. You don’t have to be left guessing how things manifest, because she has a beautiful blog to keep us all updated!

You can buy a copy of Trust Your Melody for $30, purchased via her personal website or download a free sneak preview! An E-book version will be available soon, according to Lana.

I would recommend this book to anyone in the first year or so of motherhood. It’s a nice reminder that we aren’t alone, that you can DO this, and that this too, shall pass. I wouldn’t want to gift this to someone with the birth of a baby still on the horizon; it may be a bit too scary without your own stories to draw from.

I plan on holding on to my copy and can’t wait to find just the right mom to pass it along to - Meanwhile, Lana is giving away a copy of Trust Your Melody to one of our readers WORLD-WIDE!  The winner may select either a paperback book or an ebook (which will be available in early December).

Read on to see how you can enter!





https://www.facebook.com/LanaMayes.Author
www.lanamayes.com

To enter the giveaway, you must leave a comment in this entry as instructed by the Rafflecopter below, then leave the name you commented under and your email in the box in the Rafflecopter entry. (This allows us to contact you if you win!) This will open up additional optional entries to increase your odds of winning.

This giveaway is open to readers WORLD WIDE and will end just before midnight ET on 12-8-15.

The winner will be notified by email within 24 hours after the end of the giveaway. In order to claim the giveaway prize, the winner will need to respond within 24 hours of notification, or an alternate winner will be selected.

Once the winner has responded and confirmed, their first name will be posted on our Giveaways page.

Good luck everyone!

a Rafflecopter giveaway

 

Penelope's Clubfoot Relapse

I know it has been quite some time since I’ve updated about Penelope’s clubfoot treatment. It seemed every time I thought I may have something to say, it was simultaneously a waiting game until the next checkup or milestone. Unfortunately, that is kind of the way it will feel until this is over, so no better time than now for a recap.

Last we left off, our beautiful Penny had been put into her Boots and Bar (BNB) braces. She started with 23-hour wear, as is Ponseti protocol. Yes, that means 23 out of 24 hours in a day with the braces on. It was rough. We weren’t always incredibly diligent. One hour never felt like enough, and truth be told if she fell asleep, which she often did, we felt bad waking her to put them on.
 

Luckily After about 3 months, she was granted a promotion to 16hr wear. That gave us 8 full hours out of the braces. It was glorious! We no longer had to struggle with how to spend that single hour. Do I just hold her into a small squished up ball, nurse her to sleep, bathe her, let her crawl?  We generally tried to put them on her around bedtime, which was usually 11pm. We’d keep them on her until 3pm which worked because that would let her out for all of our late afternoon/evening errands. 

Again, we weren’t always the most diligent. There were occasionally things going on that I’d tell myself it would be so much easier if she didn’t have to wear them. 

While babywearing is possible, it's clearly easier without. A lot of those times, I tried to keep her boots on and just remove the bar for a while. While I’d always feel a little guilty, I’d give myself a pass, because SHE was happier without.

Eventually, the inevitable happened, and I started noticing her heels weren’t dropping as much as they had been. Her dorsiflexion was tighter, and I even noticed a slight curve reappearing. My husband told me it was in my head, but I just had a terrible gut feeling. In the last month or so leading to her next checkup, it got even harder to put her boots on, likely because she was already relapsing.

Noticing a curve

We had created an awful cycle. We don’t put them on, she starts to curve, the curve makes it hard to put on boots, causing even more damage and unhappiness for her. All we could do at that point was wait. Well, no - in hindsight, I do wish I had contacted her doctor and addressed the issues right away, though it wouldn’t have changed much.

So the day came for us to make the 3 hours drive back to Dr. Zionts'. When he walked in and asked us how everything was going, I told him my concerns right away. Honestly, I was hoping he would make me feel better, and set my mind at ease. Unfortunately, he validated my concerns and could easily see the curve as well. He confirmed that she had, in fact, relapsed. 

We agreed on a plan to go back into a series of casts. Due to an upcoming family vacation, the schedule was a little strange. The cast she got that day would go on for two weeks. He assumed she would need between 2 and 3 casts. The second would go on for one week, and if a 3rd was needed it would last two weeks.

I was very discouraged. I felt entirely to blame and wondered if this could have been avoided. 

Luckily, our precious baby girl, didn’t seem too discouraged by this setback. She didn’t appear to be in pain, or uncomfortable. Around bedtime she was a little more fussy than normal, I believe because she wanted to curl her legs up. After a few days, was easily crawling around. I felt really bad she couldn’t pull herself up on her toys like she was used to, but I think it bothered me more than it did her.
 
Two weeks later, her feet looked so much better already! I was actually surprised when her doctor still wanted to do another cast. This one would only be on one week. 

I was crossing my fingers, toes, and everything in between it would be the last one. We were due for a vacation that would have her meeting a large number of my family members for the first time. 

Although I knew they wouldn’t treat her differently, I wanted them to really enjoy her, holding her, watching her get around, etc. So, I was beyond ecstatic when after 3 weeks, and 2 casts, she was given the green light to return to 16 hr braces.

When the second set of casts came off, her legs were very sensitive to the touch, and weak. She wouldn’t bear any weight at all. I knew it would come back in time, but it was heartbreaking to watch. 

As a small celebration we decided to take the kids to the beach. We loved the beach in Santa Monica and were very excited to share that with Penny and let her sit in the sand for the first time.
 

Since then, we’ve been much more diligent with her brace, though I’m not going to lie and say we’ve become perfect. We do understand how important it is for her future and how we are completely responsible for her little body and giving her the best chance at a normal life.

 

She is back to pulling herself up on things and bearing weight just fine on her legs. There doesn’t appear to be any indication of standing on her own or walking anytime soon, and that’s okay. 

Her one year birthday was yesterday (already!), and we are asked all the time if she’s walking yet. It hurts a little, and I know I can’t compare her to a child not dealing with the same issues, but sometimes its hard not to. But she will hit her milestones in her own time.

We’ve had one check up since, and unfortunately her dorsiflexion was a little tighter than it was at her last visit. When she first came out of the last cast, she was at 30 degrees, and 2 weeks ago it was at 20 degrees.  

Her doctor isn’t calling it a relapse just yet, so just another waiting game. On top of making sure she is wearing the brace everyday, we also have to stretch her tendons while her feet are out of the Boots n' Bars. She absolutely hates that, but it’s a necessary evil that we are taking seriously from here on out.

I am very worried about how to navigate this next leg of her journey. Her last appointment with her current Ortho is just one week before we move. Her doctor has been seeing her since she was 4 weeks old and knows her case well. Furthermore, if he DOES decide it has become another relapse, there won't be anything we can do for nearly 2 months after that. We will be leaving a week later, on the road and visiting family before we head to our next duty station in Germany. Navigating her new healthcare provider in Germany will be a full story in itself, and I don't yet know how it will turn out.

So needless to say, this has been a roller coaster. We are trying our best and its been rough, but for her we’d do anything.

Review & Giveaway: Clubfoot Accessories by Peekaboo Covers

If you have been following Penelope’s Clubfoot Journey, then you know that she has transitioned into Boots and Bars part of her treatment. These special shoes help maintain her corrected feet until the bones harden in a few years. She currently is in 23/7 wear, and in about another month will go into sleepwear only.

For the first month or so she was in the brace, we all suffered bruises from it. She had gained enough muscle control to throw her feet up in the air, which almost always concluded in someone being whacked in the head if we were lying with her.

Another common issue is the wear and tear the braces cause to cribs. We co-sleep so it isn’t an issue we face, but I can only imagine! Beating the rails of a crib every night with a metal bar would not only cause damage to the furniture, but I imagine the clanking would wake the baby as well.

Luckily, I came across Clubfoot Accessories by Peek-a-boo Covers! Peek-a-boo Covers, as a whole, sells many things such as blankets, diaper bags, car seat accessories, nursing covers, etc. However, as the owner is the mother to a child with clubfoot, she has a special section of her business dedicated to Clubfoot Accessories. Primarily she sells bar covers, but there is also some awareness ribbon Christmas ornaments and leggings.

I was able to choose the fabric I wanted on both sides (They are reversible!) as well as the embroidery. It was very difficult to choose as she had so many! I ended up going with Flannel pink and grey zigzags with a grey milky on the reverse. I wanted something neutral in case the pinks didn’t go with a particular outfit.

Since these are made to order, it is necessary to factor in a wait time. Her page says to expect approximately 2-3 weeks of wait time.  Mine arrived in just short of 4 weeks.

It is so incredibly soft! It opens to a flat, puffy square and comes with 3 snaps to secure around the bar.  It is 6 inches long. I was a little concerned with how well it would fit seeing as we had to actually have her bar cut because the smallest was still to wide for her. 

However, although it puffs a bit at the edges, it doesn’t looks bad, and has a little room to grow. Since she will have a bar spreading her feet until roughly 5 years of age, and it widens with the width of their shoulders, we will eventually have to get her larger 9 inch cover.

The only complaint I had was the font. I wasn’t particularly fond of the ‘P’, mostly. I felt it looked like a ‘J’, while my husband says he saw a ‘L’ every time he looked at it. She does, however, have a ton of fonts on her various pictures of past orders. I didn’t see any examples on her purchase page though, so I assume you would have to have a conversation with her to ensure one in particular.

Also she did send me a photo of it before sending it off, so I could have spoken up then and didn’t. I’m certainly she would have changed if I disapproved.

The stitching is not perfectly straight but it certainly does the job, and in my opinion it’s the little things like that, that personalize handmade treasures.  More importantly, this sort of speciality item really makes the entire Boots and Bars process so much easier to get through!

Peek-a-Boo’s Clubfoot Covers are machine washable, no special instructions. Ours never got messy, but for sake of review I did run it through a cycle anyway. It suffered no changes throughout, so that was wonderful!

After about a month of use, and one wash, it has gotten slightly pilly in appearance, but I believe it has only gotten softer!

According to their website, the cover fits over both the Ponseti Bar and the Dobbs Dynamic Bar.

Plain covers can be purchased for $14, and personalized ones can be bought for $19. And with hundreds of fabrics to choose from, I definitely plan on buying a few more so that it’s always sure to match her outfit!

Peek-a-Boo Covers Website
Peek-a-Boo Covers on Facebook 

Exciting news for the Clubfoot community - Peek-a-Boo is offering a personalized customized clubfoot bar cover to one of our readers!  This offer is open to US residents and is a $19 value.

To enter the giveaway, leave a comment in this entry as instructed by the Rafflecopter, then leave the name you commented under and your email in the box in the Rafflecopter entry. (This allows us to contact you if you win!)  This will open up additional optional entries to increase your odds of winning.

This giveaway is open to US RESIDENTS ONLY 
and will end just before midnight ET on 1-19-15. 

The winner will be notified by email within 24 hours after the end of the giveaway.  In order to claim the giveaway prize, the winner will need to respond within 24 hours of notification, or an alternate winner will be selected.

Good luck everyone!

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Penelope's Clubfoot Journey (part 2!)

I can’t believe how far we have come on Penelope’s Clubfoot Journey!

When we last left off, Penny had just received her second casting. Now she has been through 6 weekly casts, a surgery, a three-week holding cast and is now in boots and bar!

Every weekend for 8 weeks, we made the tedious drive to Santa Monica to remove a cast, see her legs for less than ten minutes and get a new cast put on.

Those ten minutes in between casts have been gold. Each time we would take a few minutes to clean her legs with a warm washcloth, and then I would nurse her.  She always took the castings really well. Often she would get impatient as the second leg was wrapped, and throw a bit of a fit (understandably!)  A handful of times, they allowed me to hold her while they finished, in attempts to keep her calm.

As happened with her first casting, we had a cast slip again, during her 4th casting. We could not afford to make the trip twice in one week again, so she had only one cast for about 2 days.

After that, I had a lot of people in support groups questioned whether she was A typical/ Complex. I had to completely look up what that meant. In general a complex clubfoot is any foot that cannot be corrected using usual methods.

I was informed that Dr. Dobbs (one of the two top Ponsetti trained surgeons in the US) has a facebook page that he is very active on for answering questions. I sent pictures on my daughter’s foot. He agreed that it did demonstrate complex properties but that it was hard to really tell without having seen her from the beginning to chart progress.

Once we got back to Dr. Ziont’s office that Friday, he explained a little more about complex, which has clearly identifiable markers. Some of which include a deep crease at the heel of the foot (which I realized appeared as such on some photos, but was not reality) as well as a distended toe. Neither of which our Penny presented, thankfully.

However, after a second casting, her doctor decided to cast her similarly to how you would a complex clubfoot. He would cast toe to calf as normal, then bend the knee and wrap a few layers thigh to ankle, if that makes sense. After a few wraps, he then wrapped under and around the knee as normal. In the end it looked as if she had a crazy chunky leg, but it would be near impossible to slip out of!

Luckily, this did not seem to bother her any differently than what she was used to.  It had a few added challenges. It put her at a different angle, for one. However, it actually created a deeper seat when holding or wearing her. Unfortunately many of her storebought leggings would no longer fit onto the casts due to the thickness and sharp angle. Although, I had recently started to make my own, which allowed much more stretch!

After application of her sixth cast, Dr. Zionts scheduled her tenotomy for the following Tuesday. I was extremely nervous but I knew she was in good hands.

A tenotomy is a tendon lengthening surgery where they make a small incision and clip the Achilles heel. After all the casts her feet were no longer curled in, but they still had no dorsiflexion (the ability for the toes to stretch toward the shin), which is what the surgery was going to correct.

We knew that she was going to have a follow up appointment three days later that same week on Friday, so decided to stay in Santa Monica the full week. We also all felt more at ease with her being close by afterwards incase anything went wrong. My older daughter, Hailey, was going to be along for the ride as well, although I hated having her out of kindergarten so long.

That Monday, Hailey woke up with a terrible cold. I immediately thought of all the ways this was really terrible. It was going to make for a very long week, but more so I was worried about Penelope catching it and not being able to have her surgery. We also had Penny’s 2-month well baby checkup. Thankfully, they agreed we should delay vaccinations until after her surgery so we didn't have to worry about side effects on top of everything else. They also gave us some surgical masks for Hailey.

While there, we received a call from the hospital in Santa Monica informing us of what time to be there. We were previously told that newborn surgeries are always scheduled for the morning, due to the fasting that needs to be done. So finding out that her surgery was scheduled for 12:45 pm absolutely threw me!

The following few hours were filled with back and forth headaches dealing with the guidelines of fasting. They originally said no nursing the 4 hours leading up, and clear liquids for 2 hours longer. So theoretically that should mean last feeding at 8:45, except then they go on to say, 6am! That would be a full 8 hours in between feedings. It seemed like nothing I was saying was making them understand that their math was off. Finally, they consulted her pediatrician, and she said breast milk, not formula, is mostly considered a clear liquid so it was ok closer to her surgery. We settled on a feeding 3 hours ahead of time.

Although I felt bed, Hailey happily wore the mask in the car for the few hours it took to get to Santa Monica, to avoid getting the baby sick.

The next morning, we woke very early, we to breakfast, and headed to the hospital with a very sick 5 year old in tow. Penny had her last feeding around 9:30am and seemed to do just fine afterwards.

When it was time to go back, I went with the baby alone while my husband and oldest waiting in the waiting room.

I met with her doctor, the anesthesiologists, and the nurses that would all be in the room. Everything was going fine until they tried to take her vitals. They had to take tape a pulse reader onto her ear, which looked pretty darn uncomfortable. After about 45 minutes, they were ready to take her back.

At this point she was now in full-blown tears and I felt just awful. They issued me a beeper like you get at restaurants when there is a wait, and sent me back to the waiting room. We decided that instead of waiting and worrying, we would spend the 30-45minute time frame hitting up the hospital cafeteria.

By the time we were done eating, it was right at about 45m so we headed back. Time was dragging on and on and before we knew it, it had been more than an hour past the time we'd been told to expect to see her. 

Obviously I am now in pure panic mode. The receptionist was able to look in the computer and see that she was out of the operating room but they were waiting for a recovery bed to clear up. By the end we waited nearly 2.5 hours and I was in full tears.  I also needed to nurse very badly. When they called our name, I rushed back to find smiling nurses and a crying baby.

They saw me and were completely confused. I explained to them how long we waited and how no one was telling us anything and after 5 minutes they all had tears in their eyes and one of them hurriedly handed me my babe. She nursed right away!

Her surgery went completely fine. She was already cast so I never say the incisions. She was hooked up to an IV as well as the pulse reader.

After about an hour wait in recovery, they let us take her with us to the hotel. They even let me keep the baby hospital gown!

The drive from the hospital to our hotel is roughly 45 minutes. It took over two hours because we had to stop so many times! I had never seen my little girl in such an awful mood. We gave her some Tylenol, which seemed to help a bit but those first few days were pretty rough.

We had a quick follow up that Friday, and then headed back home. A full week in a hotel definitely made us all miss our beds!

Now we were on a count down to the next big step- getting the casts off! Three weeks later, on Nov 21st, we were heading back to the hospital to switch to 23/7 boots and bar wear.  

For one hour a day, Penny would be allowed a break from wearing the boots and bar. I spent the weeks fantasizing about what we would do with that glorious free hour each day. First on my list was holding her in the shower! I also couldn't wait to kiss her feet, and let her kick at her play mat, and do tummy time more comfortably!

As soon as we walked into the hospital, my stomach fell. It was like our very first visit all over again. While we sat and waited to be called, I started crying. I wasn’t sure how to place my feelings. I should be happy, right? I was happy. But I also felt sadness. She was used to the casts. WE were used to the casts. It was all we had really known of her. Crooked feet and heavy casts. And we were about to see our baby girl in a whole new light, and I felt unready for it. I know that sounds silly.

Thankfully my husband said he understood completely and felt the same. Of course, we know it’s all in her best interest and this is all giving her the quality of life of any normal child.

When the casts came off, I was in shock. Her feet looked so good! She had ankles for the very first time. It was absolutely amazing to see. She didn’t much care for the brace, but I can’t say I blame her. We had to take a few tries putting in on in the office to get the feel for it. We also realized while there that we never thought to bring socks, seeing as that’s nothing we’ve ever had to buy her. Once we had them securely on, she actually didn’t see too bothered by them.

We’ve been on this step for about 2 week now, and I couldn’t be happier! We love our free hour and fill it with as much playing, stretching, bathing and love as humanly possible. She seems a much happier baby and gets so much enjoyment from kicking those little piggies.

I will say that, I assume from being baked in socks and a boot all day, she does not have the yummy baby feet smell. They smell so bad before baths!

My husband loves telling her she looks like she training for the Olympics with her little baby snowboard and can’t wait for a stranger to ask so he has the opportunity to tell them that’s why she is wearing it.

As of yet, we have had no major complications. She did have a decent size bruised looking blister forming on her heal on day 2, but after doubling up on the socks, and really ensuring we were getting the straps as tight as we could (to avoid friction), it seems to be doing a lot better! 

Then just the other night, cast-slipping Houdini stikes again! We woke up to her very pleased with herself in having somehow escaped her braces. This caused a blister to pop. We just cleaned it up, applied a blister band-aid, double socks and put her back in.

There was been a bit of a learning curve in the beginning. There is a bit more work that needs to be done to accomplish baby wearing. I am going to be looking into a more comfortable carrier soon. We still use the Baby K’tan, but I’m not sure it’s the best option with the boots and bars (BNB).

The first few days, she was really skittish of her feet being touched. Sometimes would break into tears as soon as you would, thankfully that has worn off!

I was really worried about nursing, but not much has changed with that, other than that she now has one leg up in the air.

In one of the first few days, I was really beating myself up over a small accident. When putting her boots back up, I had her on my lap, legs pointing away (so I was working upside down) I put her boots on, and then went to connect the bar between, one foot at a time. 

I realized just after clicking in the second heal that I had done it backwards, facing both of her feet backwards! It was the longer split seconds ever while I fumbled to unclick it back off. 

I couldn’t believe what I had done. While it did no harm, I didn’t even want to touch her brace for the next day or so.

We have a checkup in less than 2 weeks, then again 5 weeks after than, and lastly 6 weeks after that, and then we are onto night time only BNB!

My little princess has been through so much already, and some days I just feel so badly for her but she takes every turn with such grace and has managed to quickly adapt to every change without much protesting. 
o I so admire this beautiful baby girl. I also have complete faith in her doctor, and don’t doubt that in a few years, this will all be a thing of the past!

Thank you, Dr. Ziont, and thank you, Dr. Dobbs!  

We were Featured!

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