Craniosynostosis: A Response From A Dad

It is no small, strange thing, the feelings that come to the surface this month. We are forced to pause and reflect upon the path that our lives have been lead down over the last five years. All because of one long, scary, word that we did not know before our daughters birth. Craniosynostosis.

We look back and see what we have all endured. Kati and I, as we became parents. As we watched our daughter defy the odds that she was given, and face greater challenges than many of her peers. With every vlog, conversation, tweet, blog, and post, we have relived some of the nightmares that we barely made it through. There have been more solemn nights over this past month, then during the entire year that has lead up to September.

But, it is not all bad. Over the same time we have been able to look back at all of the accomplishments. We look out our window and see our sweet daughter climbing a tree, and hanging upside down. This child for which we were told may not walk. We listen to the laughter ringing through the house, and the stories that she tries to tell us. This child for which we were told may not talk. Granted, it is in a language that only we can understand, but we understand. We reflect on old movies and pictures showing each and every surgery she has been through. Breathing a sigh of relief we see how far she has come. This sigh is hesitant as we know not the road before us.

Though the fires that have hardened us, the mountains that have climbed, we have been made strong. We have found that our greatest strength has lied within our darling daughter. Resilience, repose, defiance, independence, all these and more are her forte. From her we have drawn much into ourselves. We thrive on the tears and laughter, always the laughter. The pain and discomfort that we feel with this time of recollection outmatched and outpaced by the revelry and ballyhoo of where we are.

Craniosynostosis, you are what WE make YOU.

But, in the stillness of the night, there are still the hard moments. The ones that draw out of us the words that no one else is saying. That compel us to write them down, exposing our fears to the world. Posts like this one, by my beloved, that floors me. We scream into the wind out of frustration, begging for others to relinquish their positivity, for just one moment. To be real about this world that we live in. To become better beacons of hope, real hope, for those that are sailing the uncharted seas with us. Especially to those whom have found themselves in the eye of the hurricane that is this world, per manum Dei.

We cannot live in fear of inadequacy. For all of us that are in this world of Craniosynostosis should have realized…

Our children have taught us better.

Live big, love bigger, and be kind, always

Sleep, where we are going we don’t need sleep…

For far too long we have been off the radar. We have been working hard at creating a new format for our vlogs, and those should be starting again soon. Kati has been doing an awesome job juggling all that there is to do taking care of a house full of children.  I have been working towards launching a dad’s group here in Richmond, more preparation on a book that I am writing, projects, and more projects. Sleep has long since been a common thing for either of us.

Averaging, still, three hours of interrupted sleep has been my thing so long that I think I am going to make business cards that state it. At current, it is not due to the (almost) eight month old Jacob, or the potty-training three year old David, or even the amazing and full of life five year old Zoey. Life. It is the time of year where projects are the thing to do. Also, scraping every moment of family time that we can. Sure, there is the awesomeness of the days lasting longer.  That SO helps when you tell your kids that it is time to go to sleep.  David, in particular, has gotten great about pointing out that the sun is still up.  This means that it is not bed time, right?

“Every mountain top is within reach is you just keep climbing”. Barry Finlay, Kilimanjaro and Beyond

But, there is a ray of hope. There is a glimmer of light cresting over the pinnacle of this phase of life. We can see the cairn that we have been building in this place, as we face the light. The work that we have done, the nights that we have spent working, are coming to an end. Soon, we will be at the peak, facing a new dawn, and a slope that we can coast down.

There is more to come. Hopefully it is all awesomeness. There will, undoubtedly, be many more summits ahead of us. But, and this may be the lack of sleep speaking, I think that we can take them on. Thanks for hanging in there with us.

Live big, love bigger, and be kind, always.

Watercolors: Testing Affiliate Links for Amazon

It is that time of year, fun arts and crafts with the kiddos! Recently we have been letting the kids experiment with watercolors, and it has been awesome. Melissa and Doug have been staples in our home ever since Zoey was a year old. The quality of the products that they produce is outstanding.  After all, they have been able to stand up to the overzealous play that my kids are known for.

Here is something that we have been using with Zoey and David as of late… and they love it. It seems weird to be posting about watercolors. Seriously, you can get these things for a dime a dozen. However, there is just something about these watercolors that make them stand out above all others. The fact that both our 5 year old (still not used to that) and our 3 year old love painting with them should say a lot. I think that more is said by the fact that these watercolor sets put up with our 5 and 3 year old.

Watercolor Painting

This link for the Melissa & Dough Paint With Water Activity Books Set: Farm, Ocean, and Safari are the ones that the kids are digging the most. The link is an affiliate link.  This means that if you purchase the item using the link, that Amazon will take a portion of your payment and send it to us to help us continue to grow this channel. Though this sounds like a rave review for these watercolors, it is not a paid endorsement. It is merely a chance for us to test our Amazon affiliate links. It is also a chance to share something awesome that we use with our kids.

More than watercolors.

Care to share some of the awesomeness that you have found to do with your kids? What awesome crafts have you found for your kids to do?

This started as a chance for me to test an affiliate link, and turned into a post…. #bloggerproblems

Live big, love bigger, and be kind, always.

Updates, Updates, SOOOOOO many Updates

We are STILL getting caught up on everything.  It does not help that we are at the busiest part of the year.

We have started the slew of birthdays for our extended family.  We average one a week for the next two months. Seriously.

There is also the garden, that is starting to come along nicely.

Plus there is the general building, fixing, creating, making, that we all do.

I also have some projects that should be starting soon, and I still need to share my most recent.


Life, all-in-all, is awesome! We are not complaining, but we hope to get back to all the things soon.


Thanks for hanging in there and helping us…


Live big, love bigger and be kind, always.

*taps mic*

Is this thing still on?



Hey everyone!

We have been super busy, but things are going well.  Soon, very soon, more posts will be coming!

We also have a vlog now… because sometimes video is better.

Check out our channel on YouTube at: 


Live big, love bigger, and be kind, always.

Take a tour, win some cash! It’s a giveaway!

Welcome to the soft opening of our new blog!  We are celebrating with a Giveaway!


If you dig a little you will see that we are still working diligently on categorizing five years worth of posts. We are also tinkering with some new ideas.  In light of that, we invite you to look around and tell us what you think. In addition to our heart-felt gratitude, your opinions will earn you a chance to win a $25 Visa Gift Card!

If there is one thing that we have learned in the last five years, it is that we need to seek feedback from you, our readers. That is exactly what this soft opening is all about. You! For the next few days we invite you to look, ask questions, and make suggestions.  Tell us what you love, what desperately needs help, and what should be tweaked a bit.  We want to do our best to ensure that we are giving you the content you enjoy, in a format that is most appealing.

How do you win?

Starting the morning of 12/01/2016 and ending at midnight (EST) on 12/04/2016 you can comment on the entry below.  You can comment once a day, and each comment earns you an entry!  You can also follow either of us on Twitter for an additional entry.  Finally, you can ask others to review our page as well. Each person who enters that you have invited will earn you another entry!

On 12/05/2016 a winner will be drawn at random and notified.  We will reach out to the winner via email or social media to get their address and then will send them a $25 pre-paid Visa Gift Card!

Most importantly, between 12/05/2016 and New Year’s Eve we will take all of your ideas into consideration to see what we can make happen.  Our plan is to go live with a united, Brand New Blog on New Year’s Day with ANOTHER contest! So, please subscribe and keep up to date with all we have going on. You won’t want to miss it!

Thank you so much for your time and your input.  We are very excited about what we have in store for you, and we hope that you are too.

Cranio Family Blog Sneak Peak


Zoey’s Post-Op Appointment and Beyond

This morning our family met with Dr. Jennifer Rhodes, Zoey’s Pediatric Plastic Surgeon, (as well as her Care Coordinator) to cover any questions and concerns, as well as to provide some clarity for Zoey’s healing and medical path.

To recap, over 12 hours on July 30th, Zoey’s latest and biggest procedure involved an anterior cranial vault remodeling and a fronto-orbital advancement. In layman’s terms, they remolded her forehead to allow for a more natural-looking space for brain growth by making a bunch of little cuts on the inside of her skull (yes this means they detached a portion of her skull from her brain to work on it) and they also built up her eyebrow region to provide more protection and placement for her eyes. If you are interested in more details, Google offers some great insight through medical journals and current articles; although you may want to avoid the images if you are sensitive to that. Now that I am able to breathe again, I’ve been really interested in the details of how they made it work. It’s pretty amazing. Michael has a great way of describing it using watermelon (craniodad).

But back to the visit, I would describe Dr. Rhodes’ tone of voice as cautiously optimistic.  She doesn’t sugar-coat rainbows and unicorns, but she will always offer every ounce of encouragement she can in what she sees and in how she is able to help.  I have always had an extreme amount of respect for her because of this ability to funnel all of her information into what we need to hear and what will be most helpful for Zoey. Today was no exception. The first sentiment I remember hearing from her is that Zoey now looks a lot more like her little brother.  This is something I had remarked on only yesterday. Standing next to each other, they look more like siblings today than they ever did pre-surgery. (And yes, at 9 months old David is beginning to stand now!) Dr Rhodes used photos of both Michael and me in her plan for reforming Zoey’s face, so there was an obvious attempt to maintain a family resemblance. I would say mission accomplished!

Slightly beyond the scope of surgical intentions though, are the facts that Zoey has been sleeping better, breathing better, speaking better, and responding more readily in conversation in these last few weeks than ever before. It’s hard to know which factors have contributed the most: among David babbling, less cranial pressure, settling into life as a 2 year old, and hearing so much more conversation from visiting family. But the timing for a post-op evaluation has been great.

The incision itself is healing very well and is largely covered by Zoey’s hair already. The stitches will dissolve, and many are coming out on their own now. Swelling is minimal and only in the morning. We have stopped all pain meds. Continuing in the tone of cautious optimism, we are scheduling follow up appointments with a few other departments to make sure many areas of development are accounted for and discussed.

This afternoon we met with another doctor to talk about Zoey’s ER visit last week. We will be seeing him again for some testing to explore a possible reason behind Zoey’s difficulty with digesting food, especially post-op. Next on the list is ophthomology in early November for another eye exam. We anticipate a strabismus procedure some time next year to allow her eyes to work a little better together. In my mind anything not cranio-related is “minor”, but it is an important surgery that needs to be well-timed with her facial and physical development.

Any other developments regarding future procedures and time in the hospital will result from Zoey’s next CranioFacial clinic in November. These are hosted by Dr Rhodes and involve multiple specialties within a single hospital wing.  Each specialty receives patients over four hours, and then compares notes with everyone else to provide a more holistic treatment plan for each patient. It makes for an exhausting, but very productive morning for all involved.

I’m happy to be working with only two or three specialists beyond clinics this year. And after only two years, I’m also getting to encourage other families with kids going through multiple surgeries and procedures. There are some low, scary points, but there are also so many encouraging steps along the way.  It is important that families recognize the good in the midst of the daily frustrations and overwhelming flows of medical information. Things that I am already taking for granted in David were huge milestones for Zoey. So there are more tears and feelings of personal inadequacy, but there are also so many more little celebrations with each reached goal. It’s weird for me to think that when Zoey was David’s age she had already experienced anesthesia four times. So much can happen in so little time. I’m so grateful for two amazing babies, and for the ripples of joy that they cause in our family and everyone around us. Zoey is healing, I’m breathing again, and life is good 🙂 Thank you, Lord!