Kyle's Journey, in Honor of World Clubfoot Day 2016

If you visit our Facebook page, www.facebook.com/lifewithkyle, you'll find a video of Kyle talking about his clubfoot journey. 

Here, I'd like to share with you all the parts of his story he doesn't remember. This is a little collage I made to illustrate his journey and how far he has come since his birth. From left to right, each story illustrates a part of his journey.

Far left: Kyle's leg post op, January 2016. He had three metal screws sticking out of each leg (the third one is on the outside of his foot and not evidenced in the photo). He was fresh from a bilateral derotational osteotomy, wherein both his lower leg bones were surgically broken and rotated to further allow correction of his clubfeet. 

Middle, top left: Waiting to get his full length casts off, May 2014. This was post tendon transfer, which took place in April 2014.

Second Middle, top left: Kyle the day he was born, July 26, 2010. You can see his bowed legs, his clubfeet, and even his bluish tint from loss of oxygen. 

Far Right, top: Kyle just a few days ago, post castings, braces, AFOs, surgeries, etc. Nearly six years old, and at last, he stands straight. He does not and may never be physically able to do certain things, but oh my heart...look at those beautiful feet!

Far Left, bottom: Kyle and his bear Clover in the hospital December 2015. Just a day or two post BDO. 

Middle, bottom: Kyle awaiting surgery with Clover April 15, 2014. This was his tendon transfer.

Far right, top picture: Kyle in October 2011, post a failed tendon lengthening procedure. He was wearing full length casts, curled up on a chair in our living room, reading a book. Kid is tough as tough can be.
Far right, bottom picture: Kyle in August 2011, his first round of Ponsetti Method casts. 

Here, we have pictures of Kyle's feet sans casts and braces throughout the years. I actually made this last year (2015), so we're short a picture of this year's, but just scroll up: you'll see 'em. 

Top, left: Kyle and my mother, his Lala, when Kyle was about two months old or so. You can see his bowed legs and clubfeet.
Top, right: Kyle's feet, post tendon transfer 2014. 
Bottom, left: Kyle's feet, May 2015.
Bottom, right: Kyle's feet October 2015, the day we found out he would be having the derotational osteotomy after all.

We found out sometime in 2012 that Kai's feet are not the only things affected by his clubbed feet-they have affected his entire bone and muscle structure from his hips down. Not uncommon, but not something we were aware of before. The brown things on his legs here in this picture with his PCA were his knee immobilizers-meant to hold his legs straight and make him do a sort of robot walk that helps to strengthen his hips and his butt to correct his posture and help him walk more "normally." Sadly, this intervention failed. To this day, Kyle has problems with his hips and his posture which affect his ability to walk, run, jump, etc. as others do. 

Here we have ourselves another collage, containing some of the pictures I couldn't fit on the other collage.

Top, left: Kyle, October 2011. Some of his first Ponsetti Method casts. Although this method has become the most popular method (and is almost entirely non-surgical) for correcting clubfeet, not every child responds to it. Kyle was one of them.

Top, right: Kyle, March 2012, happily playing with his toys, despite the heavy casts weighing him down. 

Bottom, left: Rotator straps, or what I lovingly referred to as "Medieval torture devices." These were used to help fix his muscular and skeletal structure without the need for surgical intervention. As we all well know, that...did not go as planned.

Bottom, right: Kyle's feet, roughly February 2013. Rather than improving, his feet had at that point worsened. He was nearly back to where he was the day he was born. It was during that time frame that I realized it was time to push for a different  method, and came to accept (though terrified) that he would most likely need surgery.

In all, Kyle has had 82 casts spanning the first five years of his life. Because his first pediatrician believed his feet would "fix themselves," Kyle was not able to get treatment for his feet until he was five months old. Due to an insurance problem, he wasn't able to continue with treatment until after his first birthday. In part, these delays helped make the situation worse. Kyle didn't walk until the end of March, 2012. Even then, as most children do when they learn to walk, he was not steady or able to walk far until nearly a year later and after rigorous physical therapy. In addition to the casts, Kyle has gone through three rounds of what we call "BnB": boots and bars, in which a clubfoot child wears braces attached to a bar, used to keep the feet in the correct position for 23 hours out of the day to start, eventually going to twelve hour wear. He has had several pairs of AFOs, or what we've referred to as "braces," to help keep his feet in the correct position as he walks. Those failed miserably. 

Through it all, this child has let nothing hold him back. He is strong, he is determined, and he's faced almost everything with a smile on his face. To be his mother is an honor. To watch him grow and become a young man is a joy. To share him with all of you and see how much love this child receives humbles me. 

Our journey started nearly six years ago. His journey is not over yet. He will continue to see his ortho every six months for the foreseeable future. He may relapse, as he has in the past. But we have at last reached a point in his life where surgery may finally become a distant memory, and multiple rounds of casts and interventions a thing of the past. 

And without the love and support we have received over these six years, we would not have made it this far.

Thank you all for being you, and for loving my son as much as you all do. You're all wonderful. Pizza for all of you.

Mom's Tools for Staying Sane...ish

Whether you're like me- a work at home single parent-or not, we all need a break. But how, HOW do we get a break when our kids have issues typical kids don't? Having special needs kids can often make it hard to leave them with a sitter, so what do you do?

Some of us have family members our kids are comfortable with who can take them for short periods of time to give us a few hours' break (or maybe a night). Others don't- maybe they live too far away, maybe their family cannot handle their child's needs, maybe there's no family left. And even for those who have family to help out can't always turn to them for help- if you're in meltdown mode at noon and your family members are out of town, at work, or otherwise unable to help, what do you do???

Keeping in mind that my kids are higher functioning, so what works for us may not work for you, here's some ideas from Mom's Tools for Staying Sane...ish:

1. Pop in a movie the kids will watch, hand them a snack, and lock yourself in your room for the duration. Or until someone screams. Screaming should probably be dealt with by an adult. Probably.
2. Stay up an hour or two after the kids go to bed. Watch a movie. Drink some wine. Read a book. Take a hot shower.
3. If you're not a night owl, get up an hour or so before your kids (unless your kids are like mine and get up at 3 a.m. Then, by all means...sleep as long as you can!), and drink yourself some coffee or tea, watch the morning news, whatever.
4. Speaking of time to yourself, actually use that time for YOU. No, put down the laundry. Step AWAY from the sink. Don't you DARE lay out that kid's clothes yet! Bad, Mom, bad! Sit. No, really, SIT DOWN. Good Mom. Now, drink your coffee. Yes, it's hot. It's SUPPOSED to be hot.
5. Can't trust the kids in the living room alone? Okay, guys- quiet time! Everyone to your room! Yes, your OWN room. Because I don't trust you to let your brother live in one piece in the same room, that's why! Set a timer and no one is allowed out until that timer goes off. 
6. Separate. Bedtimes. Yes, really. The King goes to bed at 6:30. Taryn goes to bed at 7:30. Kyle goes to bed at 8:30. I get individual time with each kid so they are less likely to hang on me throughout the day, AND their bedtimes are early enough that staying up for a bit after they go to bed for myself won't kill me when they inevitably get up before the sun. 

Will those ideas work for everyone? Naturally not, but it's a starting point, at least. Every parent needs time to themselves. We didn't stop being ourselves just because we became parents. I have always needed time to myself- I get way more than just a bit cranky without it. What do you do to get time to yourself? 

To The Ones Who Came Before

Mother's Day is this weekend here in the US. And while we deliver our handmade gifts to mothers in our family and wish our mom friends a happy day, I'd like to take a moment to say thank you to a group of moms it's my pleasure to know, but have never met:

The ones who came before me.

To all the moms who came before me, thank you. Thank you for fighting to get our special needs kids the treatments they deserved. Thank you for fighting for their right to an education, their right to be raised at home as opposed to parents being pushed to put them in institutions.

Thank you to the moms who started the fight with insurance companies to make it easier for us to get our kids the coverage they need. Thank you for pushing for recognition of our kids' needs. Thank you for fighting for their right to the help they need.

Thank you to the moms who looked at the equipment given for their kids needs, whatever it was, and saying, "There has GOT to be an easier/better/more kid-friendly way to do this." Thank you for helping teach the world that our kids may have medical issues, but they are still, and deserve to be treated like, kids.

Your fight, your persistence, and your determination makes the path I travel much easier than it was when you started on it.

To the ones who will come after me, I hope our continued determination, persistence, and fight make your path even smoother than mine.

Happy Mother's Day.

I Saw You

I saw you today. I saw how flustered you were, how embarrassed you were.

Your precious little girl was screaming at the top of her lungs because she didn't understand that you had to pay for her toy before she could have it. She grabbed hold of the older woman behind her and tried to drag the woman towards the exit. Your eyes widened and you gave a horrified gasp as you raced after your daughter, apologizing to the woman as you gathered your child in your arms.

Another woman started in on that horrible rant. "Oh, give her to me! A day at my house and she'll never act like that again!"

"She's speech delayed," I heard you say. "She doesn't understand. She's in therapy. She's trying."

But the comments kept coming.

And I saw your exhaustion. I saw how tired you were, how worn down by this life. You needed a friend, a hug, and how I wish I could have provided that for you! But I was weighed down with my three children, our purchases, and their hyperactivity, because my son's birthday was today and they were hyper and excited. And I didn't say anything, and how I wish I had.

If I could go back half an hour to that store, I wouldn't let you leave without telling you. My oldest didn't talk until he was three. I still have days like the one you're having. My kids don't always get it either. And you're doing just fine. It's okay. Kids aren't meant to be perfect, anyways. No one is.

But mostly, I would like you to know I saw you.

Calm Down! It's Just a Little Blood

Today is World Hemophilia Day! And y'all are being treated to a double feature blog post today! Aren't you excited?

Hemophilia is used by non-professionals to describe an array of clotting disorders, because it's the most understood term, thanks to the British royal family's history of the disorder. In actuality, there are many different types of clotting disorders. Hemophilia A, Hemophilia B (Christmas Tree), Von Willebrand's Disease, Stuart-Prower, and many more are all part of the clotting disorders family.

Despite major advances over the years, an estimated 75% of people with hemophilia disorders around the world are still subject to inadequate care.

So how can you help?

Donate to the National Hemophilia Foundation.

Spread awareness by posting donation information in your place of business, participating in walks and runs, and sharing the NHF website. Heck, you can even share our VWD posts!

But, in our humble opinion, the most important thing you can do for clotting disorder sufferers...is donate your own blood. So many kids and adults like my kids need transfusions at some point, and there is never enough to go around, it seems. You're always told to donate to help in case of emergency. For many suffering from hemophilia and related disorders, a nosebleed can turn into a life or death emergency. So next time you see fliers for a blood drive or see that big red bus, donate, and help save a life.

The Importance of Being Kyle

Today, Sunday April 17, is World Hemophilia Day. Y'all are getting a double feature post today, because I've been meaning to write these for the last couple of days, but time and work got away from me. (Ah, the dangers of working from home!)

Today's first post, The Importance of Being Kyle.

Because World Hemophilia Day fell on a weekend this year, Mrs. K and I corresponded to set up something for Kyle to do on Friday to teach his classmates about his disorder. I was under the impression he would be speaking to his class alone.

My son, my beautiful, brave, intelligent son, stood up in front of not one, not two, but FOUR kindergarten classes to talk about life with a hemophilic disorder and what his disorder is. He explained to his classmates and peers what Von Willebrand's Disease is, how it affects his life, and what he does to help himself with it.

This is what we call self-advocacy. And it is so, so, SO important at any age.

Encouraging a child with any form of medical issue to speak up and speak out can go a long way towards helping them with their self-esteem, confidence, and in getting the help they need. We as parents and caregivers can only do so much. We might know they're hurt, but we don't know how badly. We may know they need mental help, but we don't know what goes on in their heads.

And we can't always be there to stop the bullying.

People fear what they don't understand, and one way to deal with fear is anger and bullying. Help them understand, and you remove the fear and thus the response to that fear. By teaching his classmates why he bleeds and bruises so easily and why he can't do all the same things they can do, Kyle helped them understand him. He helped them see that he is just like them, just a little...quirky.

Are you a parent or caregiver? How do you help your loved one self-advocate? If you have chronic health problems, how do you self-advocate? How old were you when you started? Let us know!

PECS: What Are They And Why Should We Bother?

It's been a couple of weeks since our last posting. Honestly, we had no idea what we wanted to talk about! The kids and I hash over things that happen throughout our day and talk about whether we should turn it into a blog post, or if it's just a blurb for our FB pages, or if it's just something that we can't be bothered with right now. Then, I ran across this gem: What are PECS and how do we use them? Should we bother or will it delay our child's speech even further? while I was bopping around on the ASD support group message boards. DING DING DING! Blog post!!!!!! :) Everyone here? Y'all ready for some learning? Here we go!

PECS stands for Picture Exchange Communication System. PECS was developed in 1985 as an alternative means of communication for children and adults with autism to "convey their thoughts and needs."  Individuals with autism often learn best with visuals. Accepting this, we must also accept that, for many on the spectrum, visual communication may often be easier than verbal communication. It can help convey their needs, avoid misunderstandings, and even help them gain an understanding of the neurotypical world around them through this ability to communicate.

Contrary to what you may think, there is little or no evidence (at least that I can find or have heard about) that using PECS will delay the development of your child's speech further. So long as you use the system properly and don't force speech on your child, you should be fine. If your child is going to develop language skills, they will. PECS can help facilitate that.

So, now we're onto "how on Earth do I use these things?" Here's how we did it, as per our beloved former speech therapist, T's, instructions:

• When starting out with PECS, don't simply hand your child the card. Say the word pictured in the card (i.e, I would hand Kyle the "juice" card and say "Juice." at the same time)
• As you and your child gain comfort with the PECS, your child will begin spontaneously bringing you the PEC representing what he/she needs. When they hand the card to you, respond verbally. (Example: Kyle would bring me the "ball" card. I would take it and respond, "You would like the ball? Okay, good job. Let's go find it.")
• As your child begins to grow in their communication skills, enhance their array of PECS. Add feelings cards, cards with words instead of pictures (or both on one card), etc. These days, Kyle has a host of PECS that have both words and a picture on them. (Yes, we still use PECS. Kyle can talk, but he has delays and bad days take a toll on his verbal skills.)

Something else I ran across on the message boards about PECS: the expense! The system sounds GREAT, many exhausted parents of nonverbal or delayed kids say, but the cards are so expensive!

Guys, here's a little secret we here at Life With Kyle keep fairly under wraps from the people who don't know us: we're BROKE. Money? What money? We can pay the bills and that's...um...ya, that's about it. It's been that way for years. These days, we have a tad bit of "spare" money after our living expenses are taken care of, but we still live  on a very tight budget, as do many, MANY other special needs families out there.

So what's a broke parent to do? How can we get in on this awesome system when we lack the funds to buy the cards?

Ya make 'em, folks. Ya make 'em. 

Microsoft Office has clip art. The internet has oodles of free images. Magazines, newspapers, the random ads many post offices deliver to your mailbox for free each week- all of these are a wealth of places to cut pictures of the various items you want to make a PEC for from. And the fact that you're reading this blog tells me you have access to the internet, either on the computer or on your smartphone. Most libraries (at least here in the US- I can't speak for other countries! Sorry!) will let you print out pages for ten cents a page, so if you don't have access to a computer at home, head over to your local library and print away. You can even personalize them, if you have the equipment, by taking pictures with your phone or camera of various items in your house and then printing THOSE out. You can then tape, magnet, or velcro your homemade PECS to anything in your house, or take a page from our book and make a binder full of them! We separated ours into categories: food, drinks, toys, clothes, feelings, etc. 

Do you use PECS? Did you make them or buy them? If you bought them, share the links to where you got them! If you made yours, share a picture! Share the links you used to make them! Share your ideas :) And remember: be respectful and courteous, please! My kids DO read this and they ARE young, after all!