Meeting Mr. Dungy

Talk about ending vacation on a high note...

Most of you know about the plans underway for the 1st annual Little Fire Big Heart event benfitting Children's Craniofacial Association. I have a great group of friends helping me pull this thing together including reaching out to various businesses for corporate sponsorships. A few weeks ago, Ricky decided to contact a foundation that Tony Dungy, the Indianapolis Colts former head coach, is a part of called "All Pro Dad". He simply looked up the website, found an email address under Contact Us and sent a little bit about Aiden and the event.

Just a day or so later, someone from Family First, the parent company of All Pro Dad, had responded asking him to send the information to a different email address. When he did, he received an out of office message that provided yet another contact person's info, including a phone number. So he called. And he got in touch with Tony Dungy's executive assistant. For a few weeks, they emailed back and forth - Ricky provided additional details about Aiden's journey, as well as answered questions about Little Fire Big Heart. Although we knew it was a long shot, Ricky's request was to see if there would be any way to have Mr. Dungy attend the event as a keynote speaker.

You might be wondering what a former NFL coach has to do with our personal story. Why, you might ask, would his presence be relevant?

Shortly after Aiden was born, one of Ricky's co-workers let him borrow Tony Dungy's book "Quiet Strength". I remember thinking it was a nice gesture, but I had visions of it collecting dust on our bookshelf until I reminded him many months later to give it back to the person that lent it to him. My husband does many things - quote lines from movies and tv shows, make a mean batch of dumplings, throw the kids into the air until they scream with delight - but one thing he does not do is read.

However, to my surprise, less than a week later Ricky was raving about the book. It left a huge impression on him. I have not read it myself, but he said that the story was very inspiring. I think Ricky found that he could relate to some of the challenges and adversity that Mr. Dungy has faced throughout his life. What really resonated with him was reading how someone like Tony Dungy learned to rely on his faith to overcome some of the challenges that were presented to him. A few years ago, Mr. Dungy's teenage son committed suicide. He also has an adopted child with a rare medical condition. He, like all of us, has dealt with his fair share of pain and sorrow. Yet his ability to carry on with strength of character and a positive take on life is truly admirable. Something that Ricky was able to pull some strength from at a very difficult time for us as a family. Thus, his desire to connect with Mr. Dungy developed. We hoped to be able to have him speak to our event audience about making the best of things. About the importance of faith and family. About overcoming obstacles and helping our children do the same.

During Ricky's coorespondence with the Family First contact, we were told that of 22 requests submitted last month, 5 were sent on to Mr. Dungy's desk for review. Ours was one of them. Wow!

Although he is not available to speak at Little Fire Big Heart, we found out that he wants to donate to our cause! We wanted to provide the packet of information we put together for sponsors/donors and noticed that ironically, Family First has an office in Tampa - where we were going to be the following week for vacation. Ricky spoke to his contact person who arranged for us to drop off the event packet on our final day in Florida on the way to the Tampa airport to fly home.

We brought the boys into the office with us even though we were expecting it to be just a quick stop inside. Unfortunately, the person we were supposed to leave the info with was out sick, but another woman knew we were coming and greeted us at the door. Just as we were about to head out, another woman said that the original contact person (who was not in the Tampa office) was on the phone and wanted to speak with her while we were there. She led us to her office and took the call. With a slight look of surprise, she hung up the phone and asked us to wait just a moment.

Before we knew it, the Family First president, Mark Merrill, and Tony Dungy himself walked into the office and shook our hands! The look on Ricky's face was priceless. He was meeting one of his idols. This was a good day. We told Ethan that this was the Colt's old head coach, to which Ethan replied "Go Colts!" (Ricky has taught him well...) He met Aiden and we talked a little bit about his journey. He had information about our event in his hands - and not the paperwork we had just brought with us that day - emails. He really had reviewed our request personally. He said that he normally is not in the Family First office on Wednesday's but that it must have been God's plan to have us meet that day. He told us he knows the road of dealing with medical challenges with his own son quite well and he hopes the best for Aiden. He said he would love to partner with us in some way and make a donation to our cause. Then, to top it all, we were ushered into the media room for a quick picture with Mr. Dungy.

We couldn't have ended our vacation any better! I am so proud of Ricky for following through with his idea to contact Mr. Dungy. He was persistant and it definitely paid off in the end. Hopefully we will be able to bring more awareness to craniofacial conditions with the help of Mr. Dungy's kind heart.

A HUGE thank you goes out to Tony Dungy and the staff at Family First/All Pro Dad!

Ahoy Matey!

Another fun family outing while in Florida was setting sail on Captain Memo's Pirate Ship. Aiden stayed back at the condo with Nana to nurse his bronchitis, ear infections, and general case of the miseries while Ricky and I took Ethan to hang out with the pirates.

It's hard to believe that this 2 hour cruise for the three of us cost more than our entire day at Disney (our admission to Disney was free because we completed a volunteer project a few weeks ago as part of the Give A Day, Get A Day program). But I will say that it was worth the price. Ethan had an absolute ball hanging with the pirates and playing with the other kids aboard the ship. They did a great job catering to families - games, water gun fights, treasure hunts for the kids...free beer and wine for the adults!

It was our last full day of vacation and the perfect finish!

Some REAL Florida Gators!

We were so very lucky to be able to do some pretty cool things on our vacation. My uncle Kenny has a place in Tampa and met up with us at one of the beautiful Florida State Parks to take us on a canoe trip down a little river running out of the Bay. We were on the lookout for alligators - and since Kenny had frequented this park, he knew where most of their resting spots were along the bank. I have to admit I was a little nervous about this excursion, but I put on my brave face and went along for the ride. I had only one request - to paddle with Kenny (not my husband or my dad)...not that I didn't trust them, but well, okay I didn't trust them. :) I wanted to be with the most experienced of the bunch. We even brought Ethan along too! He thought it was pretty cool  although it took him a little while to find and focus on the gators that blended so well with the grass, mud and water.
Most importantly, we all made it back safe and sound and we had a great time! Thanks Uncle Kenny!

The Happiest Place on Earth

We recently returned home from our wonderful (and much needed) family vacation to Florida where we stayed with my parents in their beachfront condo in Clearwater. They are renting for 2 months and invited all of their kids and grandkids down to visit. Because it is only 2 bedrooms, my sister and I decided to overlap our stays, allowing us the chance to go to Disney World together but not having to deal with cramped quarters for an entire week.

The Very Same Waves

Two years ago, my parents decided to splurge and rent a condo on Clearwater Beach in Florida for the month of February. My sister and I were both pregnant - she was due in January and I was due in March. Avery came when expected - January 11. Aiden, on the other hand, came a bit early and with his surprise diagnosis of Apert Syndrome, caused quite a stir in our family. Especially since my mom and dad wanted desperately to be there for me to comfort us during this difficult time. They thought their February trip was well-planned around our due dates. Unfortunately, mother nature had a different plan and unfortunately they were not able to be there to hold my hand and cry with me. Instead, they heard the news with a phone call on February 11, with waves crashing in the background. They raced to book a flight to Louisville to be with us.

Last year, my parents didn't make the trip to Florida. They didn't want to miss Avery and Aiden's 1st birthdays. But this year - with no pregnancies and no ultra-important dates to keep them from going - they decided to rent again, this time for 2 months. They invited us to come down with our family. Of course, we jumped at the chance.

They rented the exact same unit in the exact same building where they stayed 2 years ago. As we touched down in Tampa and drove to the condo, I couldn't help but begin thinking about the night we called to let them know of Aiden's arrival. After we threw open the door, after we were greeted by my parents, my sister and brother-in-law, and their two girls, and after we ran down to the beach to feel the sand in our toes - after all of those moments settled, I looked around the beautiful condo and felt a wave of emotion.

I wanted to know where my parents were standing when they got the news. I had to picture it. Live it. Again. I wanted to know what room they went to to cry. Out on the balcony to let the waves drown out their thoughts and fears? In the salmon colored bedroom swallowed up in the down comforter? It was strange being there. They said they felt the same resurgence of emotion as they walked in the first day. But then, we caught a glimpse of Aiden, almost 2, tearing through the place like any 2 year old would. Touching the wooden fish decorations under the glass top coffee table. Running from end to end of the balcony.

And we realized...The same waves from the same ocean rolled in just as they did 2 years ago - yet, this time, the fears that crashed into the shore that night with every wave have now subsided. Instead we were able to relish the moment in amazement and wonder at how well Aiden is doing today.

Raising Different

When I was in elementary school I caught the bus at the corner of Creekwood and North Colony every morning. And on my bus there was a boy that was ridiculed on a daily basis.

He was quiet. Shy? Maybe. More likely he was just conscious of the ridicule and decided not to "put himself out there" by showing the more real parts of him. While I don't pretend to be the most non-judgmental person in the world, I will say that I was drawn to this boy. I wasn't sure why at the time, but it is now very clear that this was part of God's plan. Part of His way of developing me into the person that I have become. The person that I needed to be.

He was quite a bit older than me - I was maybe in 2nd or 3rd grade, he in 5th or 6th. I remember someone asking him what he was going to dress up as for Halloween, hoping he would reply with something that would give them reason to make fun of him. He was unaware of the prodding and before he could respond, I flipped around in my seat and said to the other kids on bus 236, also older than me, "Just leave him alone." I surprised myself just as much as I think I surprised him and the rest of the children.

Even though I had once sat a few rows up from this same boy at the start of the school year and whispered with my friend from down the street about his speech impediment and odd, gangly stature, I had suddenly realized that my gut was telling me it felt wrong to do so. I felt compelled to stick up for him.

This incident on the bus has stayed with me for many years (obviously - I'm still talking about it today!) and now I know why. What I didn't know then was that I would eventually be given the very important task of raising a child much like the boy on the bus. A child that is different.

I often find myself obsessing over what Aiden will encounter in his school years. How many times will he be ridiculed for the way his hands look or the facial differences that will become more apparent as he grows? I wonder what I can do to make his road easier. Can I do something to educate people about Apert Syndrome so that it will be more accepted? What about simply educating people about differences in general - teaching them to appreciate, acknowledge, accept what is different rather than belittle, ostracize and embarrass.

I know it is an ambitious goal. And ironically, I write this on Martin Luther King Jr. Day. A day that honors the dreams that Dr. King dreamed as well. Of a world that accepts people for their differences.

Most people can relate to my journey in some form or another. At some point in our lives, most of us will encounter adversity. It is my goal to give people a glimpse into what it is like to have a child that "looks different". If I can make people understand by sharing this ride then I am doing a small part. And if I can open people's eyes by making them appreciate their lives while also accepting those that might have a tougher road, unfortunately, due to the way they look, then I am one step closer to providing the life for my child that I want him to have. The life that he deserves.

Many people have asked what they can do to help. And while I am so very grateful to those who have offered support monetarily for the event we're organizing for CCA, I also want to remind everyone that perhaps the more important gift to give our family is that of spreading awareness. Share this blog with others. Send your friends and family a link about Apert Syndrome (see the link on the menu bar at the top). Point people in the direction of Apert.org or ccakids.com to help people learn about craniofacial conditions. Hopefully then, if they encounter someone with a craniofacial condition, rather than turning away to keep themselves from staring, they might feel brave enough - educated enough - to smile or start a conversation. To ask how their day is going. To treat them with the same respect that would be granted any other individual.

My purpose in life as a mother is much more clear than it ever was before. After much fear and reluctance, I readily accept this challenge. And I am starting to see how there are many aspects of my life that have unknowingly prepared me. I am grateful. I challenge you all to think about how your life would be affected if you were "raising different" too. How would you feel if your child was that boy on the bus. Wouldn't you want someone to stick up for him too? Food for thought.

A Magical Christmas

Yes, I know, it is the 2nd week of January and I'm just now getting around to writing about Christmas. My excuse? Spending this year without worrying about surgeries, surgery preparation, recovering, germs, etc. was thoroughly enjoyable. We were very much into the holiday spirit this year and I just wanted to soak up every minute. And honestly between opening the kids toys that littered the living room floor for days (and cursing the darn things that are harder to open than the vault at Ft. Knox), stepping over the unpacked suitcases and finding the motivation to un-decorate - all I wanted to do was...well, nothing.

But it is now the 12th. The Christmas decorations are all a distant memory. The new toys have found a corner in the toy room to occupy. As for the suitcases, they have yet to be unpacked from the many trips we've taken over the past few weeks. Oh well.

Christmas this year really was magical. It was so much fun witnessing the twinkle in the boys' eyes each night as Ethan would ask "Is tonight the night Santa comes? Is it mommy? Yet?" I'd point to the books that remained unread in our "Countdown to Christmas" bucket, prompting him to count each one and declare how many were left.

St. Nick was a little confused, making his quiet appearance a few days late (oops ;). But as promised, he brought matching red and green Mickey pajamas for the boys to wear on Christmas Eve - a perfect find considering our upcoming trip to Disney. (That St. Nick always has been a good shopper!) And he filled our shoes with small goodies to enjoy.

A few days before Christmas the boys and I collected a few gently used toys from their play room, sanitized and bagged them, and delivered them as a family to St. Joseph's Childrens Home in Louisville. Ethan was very excited to "share" with kids who might not get many toys for Christmas. We hope to do this every year.

The boys awoke on Christmas Eve morning with tons of energy in anticipation of all of the fun things ahead. We relaxed a bit, enjoying the calm before the storm, then headed to my grandma's condo in Louisville. It has been a family tradition to spend Christmas Eve with my dad's side of the family and I'm so happy that we've been able to continue to do so even now that I have a family of my own. Although it could have started out a little better. No sooner than we walked into her place did Aiden "explode" through his holiday attire. Luckily, with some quick thinking, I was able to toss his clothes into my grandma's washer to get them clean and dry before we left there for church.

Last year, Christmas Eve mass was a joke. The boys wanted nothing to do with sitting still so after Ricky was dripping with sweat from wrangling our little monkeys as best he could we realized it was hopeless and made our exit before the choir even finished their pre-mass numbers. This year, I'm happy to report that even with an entire pew filled with just our family (Ricky's parents, sisters, their spouses and all of our kids ages 1, 1, 2, 2, 4 and 6), we were able to stay until the end. They were actually pretty good. Ask the people seated near us and you might get a different story. :) After church we went back to Ricky's mom and dad's for food and opening presents. It was "organized chaos", but all in all a lot of fun.

When we got home and tucked the boys snug in their beds the fun for Ricky and I began. Once the gifts were placed around the tree we made a drink, took some pictures and then exchanged our gifts to each other. Ricky usually gets too excited to wait until Christmas morning, and we agreed that it is kind of nice to have the time to ourselves to do this so we can focus on the kids in the morning.

At the surprisingly "late" time of 7:15am, Ethan yelled for us from his room. We grabbed the camera, woke Aiden up and headed downstairs to see if Santa had come.

"He did! He did! Santa came Mommy and Daddy!" Ethan could barely contain his excitement. Aiden clapped and ran to the Thomas Train ride-on toy that took up half the living room. We could barely pry him off of that thing to open the other presents under the tree! Last but not least we led them to the basement toy room to see their new Thomas train table handmade by the brother-in-law of my Aunt Susan and Uncle Chris. It was the perfect end to a perfect morning.

We then loaded up the car and drove to Northern Kentucky to my parents' house where we got to do it all over again!

We feel so blessed to be able to enjoy the holidays with our family. We feel so relieved to be able to do it all this year without the stress and anticipation of surgeries and hospitals. We are so very lucky!

First things first

I know I've got a lot of catching up to do - so I'm going to start with the most important subject matter...an update from my most recent trip to Dallas with Aiden...

Aiden has had 5 major surgeries since his birth. Four of the 5 have been with the team of specialists in Dallas at the Craniofacial Center in Medical City (the other one was a strabismus surgery done locally). With these major surgeries out of the way, and no others on the horizon, our visits to Dallas will now be on an annual basis for a sleep study, an MRI and head growth measurements.

Monday morning, bright and early, Aiden and I flew to Dallas for the first of these annual visits. The last trip there was back in June for a post-op visit following his cranial vault and ear tube placement. It seems odd to say this, but having the frequent visits throughout the last 18 months, although not really fun, offered some reassurance as to Aiden's development and overall health as related to his syndrome. So, having to go from June to January was quite different. Even stressful at times. As we had no validation that everything was "okay" other than his regular pediatrician appointments - which are great, but as a parent dealing with a child with a rare syndrome, I tend to err on the side of caution and need the extra reassurance of the expert in the field (his team in Dallas).

We arrived at DFW and were met by our good friend April and her two absolutely adorable kids John and Rory Cate who brought us a car seat loaner for our rental car. We then headed to their house to let the kids play. She treated us to homemade chili and cornbread before Aiden and I had to get to the hospital to register for his sleep study that night.

The next morning we checked into a hotel (poor Rory Cate got sick the previous evening after we left and we didn't want to take any chances getting Aiden sick as well, otherwise we would have stayed with the Gorman's like they offered). I had just enough time to give Aiden a bath to scrape all the goop off of his head that they used to hold the probes on for the sleep study, and somehow managed to grab a shower myself, before we turned around and headed straight back to the hospital for his MRI.

A few good breaths of the inahaled sedative and Aiden was ready for his test. It only took about 35 minutes and then I was able to hold him as he "came to" as the sedation wore off. The results, we were told, would be ready for Dr. Fearon to share with us during our appointment with him at 4pm. Ugh - what a long wait that was!

Meanwhile, we breezed through 3 more scheduled visits: one with the anthropologist who takes measurements of Aiden's noggin to follow the growth and development of his head shape and size, another with "Media and Photography" where they snap photos of his head from the front, the top, and the side, and also of his hands and feet, and finally a quick stop to an ENT to discuss the function of his ear tubes placed last May.

It was confirmed during our visit with Dr. Kolar, the anthropologist, that Aiden's left brow/orbital rim is lower than his right, making it appear that his left eye is smaller (or droops) to some extent. I had him compare the measurements from Aiden's post-op visit last June to those he was currently taking and it was determined that the difference in measurement had in fact increased durint that time period. This means that growth in that particular region differs in degree on the left than on the right. Dr. Fearon was able to explain more...so I'll give more info when I get to that point.

The pictures went fine. He was not afraid of the camera, just of the headband that they needed him to wear to pull the hair off of his forehead. He was not a fan. But a just a couple minutes later we were finished.

Good news at the ENT. Even though his left ear tube had fallen out just a month after it was placed, it appears that his ears had no fluid and no infection at the time of that visit. The right tube was still in place, but was blocked, which Dr. Peters said didn't show to be causing any problems for the time being. He does not think we need to replace the missing tube. And he even mentioned that at this point, it seems Aiden has "outgrown" the need for tubes in the future. He mentioned that Aiden is on the more mild side as far as Apert syndrome is concerned (which we knew, but it is still good to hear). And when I asked him about my concerns with Aiden's speech and how it might be related to any ear issues, he said he is confident that based on his examination, his speech development shouldn't be inhibited as his anatomy looks great and his ears are functioning properly. (So any speech issues are either simply a developmental difference or may be because of his high-arched palatte, related to his syndrome).

Finally, the all important appointment time came. Aiden was full of energy waiting for Dr. Fearon in his office. And when he came out to greet us, Aiden didn't hesitate to explore every nook and cranny of that place. He immediately found the toys Dr. F keeps on a table in his office and headed straight for them. He attempted to sneak past him to get to his computer. He pulled books off his shelf. Dr. Fearon was clearly impressed with his development as his first words were - "Wow, he really seems to be doing GREAT". That's my Aiden :)

And next, a huge weight was lifted from my shoulders. Dr. Fearon said "All of his test results came back GREAT". He continued to explain that his sleep study showed 6 central apneas (where the brain forgets to tell the body to breathe), but that up to 10 apneas is considered within the "normal" range. So no issues there. The MRI showed no evidence of pressure in the brain, no chiari malformation, ventricles appeared to be normal size. One thing he did find was a small arachnoid cyst near the cerebellum. This scared me a bit, but he reassured me that he is not worried about it in the least. Essentially it is a small benign growth, kind of like a mole, that presents no problem in the majority of cases. It doesn't require treatment (unless it later becomes troublesome by causing headaches or other symptoms). In fact, he said he was so pleased with everything that rather than schedule our next visit for one year later, he was comfortable waiting 18 MONTHS! AND...HE EXPECTS NO SURGERY WILL BE NEEDED FOR YEARS!!!! Yes, I said YEARS! That is quite a relief considering he's had 5 in a 7 month period during the last year and half!

So what does Aiden's future hold? Dr. Fearon explained that Aiden will need another cranial vault, and mostly likely will need an additional one after that. This is because as he continues to grow, the brain still needs extra space that because of the fusion of the sutures in his head, requires surgery to ensure that the right amount of space is there. He will also need to have his midface advancement surgery ideally around age 8. This is where he will have a large metal device attached to his skull with pins that will slowly extend the portion of his face from his brow bone to his upper jaw forward with the turn of a screw (we will be turning the screw from home on a daily basis over a 6 week period...yuck). But we will cross that bridge when we get there. Finally, during the next surgery - whether it be a cranial vault or during the midface surgery to attach the device - he will, at the same time, correct the difference in growth of the left vs. right side of the brow bones that mentioned earlier, straighten his right index finger that is severely turned, fix the regrowth of some skin between two of his fingers, and deepen the spaces between his big toes and the toe next to it.

Despite this laundry list of "maintenance" that needs to be done, all in all, great news. NO SURGERIES FOR YEARS!!!! As we soared through the air on the flight home, I was definitely on cloud 9. I will admit that a part of me couldn't get the whole arachnoid cyst off my mind, which led to a consultation with Dr. Google (not usually a good idea in most situations, unless you want to be freaked out with very inconsistent information and typically worst-case scenarios). It did prompt me to send an email to Dr. F asking more questions about it. I have not yet heard back, but when I do, I will let everyone know what he says.

Once again, I can't thank everyone enough for all of the thoughts and prayers throughout our journey. There are so many people out there pulling for our little guy, some that I know of and others that I may not even know, and we truly appreciate it from the bottom of our hearts. It's working!!!! So keep 'em coming!!!

2010 - This year is gonna be about ME :)

Lots of catching up to do!!!

Lots to say about Christmas, our New Year's Eve party, trip to Dallas, my New Year resolutions, house selling update (no, it isn't sold yet), and info on the progress of Little Fire Big Heart. Plus, lots of picture updates!

But first things first - I've got to clean the house and get myself organized.

(Funny how Ricky can be gone oon a work trip and I can clean the house, care for the boys, pay the bills, sort the mail, do fourteen loads of laundry, etc....yet I come home to the same crumbs on the kitchen counter and the same pile of clean clothes waiting to be folded on the couch. Yeah...real funny. Guess the jokes on me!)

PS - I love you anyway honey :)