Will come out tomorrow afternoon. Sorry completely lost track of everything. That aside, from our family to yours, Happy Thanksgiving.
Live big, love bigger, and be kind, always.
Some time back we posted a physician rating survey in preparation for Craniosynostosis Awareness Month. Well, here we are at the end of the month, and I am just now getting to where I have something that I can post. We learned a great deal in this exercise. Most notably, how NOT to do a physician rating survey.
We had over 100 submissions from all around the globe. With very few outliers we were happy to see many high ratings. It seems that there is a high regard for the physicians that are helping our little cranio kids. I had high hopes of taking this data, and creating something beautiful. Sadly, because of the way we asked the questions, this is not the case.
Looking forward, we are already in the works for taking what we have learned, and making something better. We really feel strongly in empowering other cranio families. We know how important the doctors we chose are. It is a decision that is, quite literally, life changing. However, we must provide something for those that have submitted. Not only as a way to say thanks, but to show the baseline of what we are doing.
So, below, you will find a link that will allow you to download the scrubbed results. We have taken out the identifiable data, and have combined results into fewer entries. We are not sure if this will help, but it is something. I am certain that we will remove this link in the months to come. Assuredly by the end of this year. But, keep your eyes out for a new survey early next year. One that will be easier for those filling it out, and provide better data on the back end.
Thank you, again, to those of you that filled this survey out. You are helping us create something awesome.
Also, for those that took the Craniofacial Acceptance Month Quiz, thank you. Your results will be out early in October.
Live big, love bigger, and be kind, always.
Is this thing still on?
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.
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.
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.
For all those amazing dads and family members who took over the typical mom duties of preparing the kids this morning to give her a break, thank you! I am smiling at the neon socks and messy ponytails, knowing there is a great amount of love behind them. Bonus points for those of you who stepped into the role today and totally rocked it!
Flashback: When I was about 6, our church had a women’s retreat over the weekend of Mother’s Day, ending Sunday evening. I remember a few families arriving for the traditional service that Sunday in various stages of readiness. One dad had even recruited a friend to braid his girls’ hair in the foyer ahead of time. I know that there are dads who regularly handle these tasks, and I don’t mean to demean or negate their parenting talents. If anything I would say rock on for being so invested in your parenting. I do, however, find it very endearing and encouraging to notice parents who step into roles that they might not otherwise be comfortable or familiar with for the benefit of their children.
So excited about my beautiful early Mother’s Day flowers! I will probably post again when they open. Thank you craniodad!!! I think he kind of likes me.
Yeah… I just kinda like you minorinspirations. In fact I am just madly in like with you. Happy Mother’s Day my love. Even when they do open, they will pale in comparison to your beauty.
People say to me, when I’m telling my life struggles and amazements, “Oh yes, I know.” And what I want to say is “Really? Do you really know?”
Do you know expectations, like those that come home from the hospital with that beautiful babe of what his future holds? Do you know what it is to have those expectations crossed off one by one or all at once, only to have them replaced by new ones? Oh yes, you know expectations, but do you know hope?
Do you know achievements, with all their hard work and determination, big or small or somewhere in between? Do you know what it is to spend hours on each and every baby step? Oh yes, you know achievement, but do you know triumph?
Do you know teachers and aides who give their all every day for the time they are with your child as well as hours after in planning and preparation? Do you know what it is to put 6 hours of effort into 40 minutes of success? Oh yes, you know teachers, but do you know heroes?
Do you know patience, and the endurance of cleaning up spilled milk every day for years and not crying over it, or wonder if he’s doing it on purpose. Do you know what it is after years of getting milk all over your hands to go nine whole days without a single drop of milk getting spilled. Oh yes, you know patience but do you know joy.
Do you know judgement, good or bad, in the looks of others as you help your child navigate his day? Do you know what it is to rise above the scorn and scowls and do what needs to be done when your child is having a “moment”? Oh yes, you know judgement, but do you know strength?
Do you know Christmas, and all its miracles and everything it stands for, or perhaps another holiday held sacred to you? Do you know what it is to almost lose everything, even Christmas, in the blink of an eye, but to have it returned to you? Oh yes, you know Christmas, but do you know gratitude?
Do you know love, and the warm fuzzy feeling that comes with snuggling with your child when he’s getting ready for bed? Do you know what it is to read all the reports, and watch your child “blow it” at another chance at a relationship and significantly impact your relationships as well, and to love him anyway? Oh yes, you know love, but do you know unconditional love?
Do you know serenity, and security in watching your child sleep, knowing they are home in your safe and loving care? Do you know what it is just hours before to have the entire Police Department and all of your friends driving around looking for your child while you pray he’s not broken in the middle of the road? Oh yes, you know serenity, but do you know peace?
Do you know words, and the power of communication and emotion they create, especially those four amazing ones that tug at your heart. “I love you Mommy.” Do you know what it is to wait for years to hear any words and even longer to hear those magic words. Oh yes, you know words, but do you know miracles?
October 18, 2010 by Lily Belland
I am often asked to describe the experience of raising a child with a disability–To try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It is like this …
When you’re going to have a baby, it’s like planning a fabulous trip–to Italy. You…
Love this. I have used this analogy before when describing what it is like to be a Cranio Dad. It is simple, it is complex, it is beautiful… it is awesome
We haven’t had any major hospital time since last summer. Our family has thoroughly enjoyed celebrating successive holidays from Labor Day through Easter without any worry of incubation periods in preparing for surgeries and recovery time. We had other financial stresses that have kept us close to home, but these days have been so sweet.
Today we are preparing for Monday’s procedure. I haven’t written about it yet, but it’s time to face the music as another script on the pediatric surgical floor has started for Zoey. This is a relatively minor procedure, especially in light of the experience Zoey has on her resume. Her ear tubes were removed a few months ago as they had already been used for a year. A short hearing test and exam revealed that Zoey still has fluid built up, and she provided questionable hearing results. This procedure has three parts, all of which are estimated to be completed in an hour. We check in at 6am. Zoey is first on the list, so her procedure should begin around 7:30am. Once under anesthesia, Zoey will have a second set of ear tubes inserted, she will have a more reliable hearing test, and she will have her adenoids removed. Recovery is minimal and she should be back to herself by the next day. The plan is to go home once she wakes up, and hopefully there won’t be any surprises that delay her discharge. Please keep her in your thoughts and prayers.
My beautiful wife beat me to an update!