Whirlwind trip to Dallas

After heading to NKY for my mom's surprise 59 1/2 birthday party last Saturday (more on that later), I stayed up there with the boys and we left for Dallas on Tuesday. My mom and sister came along this time to help out since we brought Ethan with us as well. This was his first time on an airplane so he was very excited (unlike his younger brother who is now a super-pro at flying)!

Ethan loved every minute of the flight. He was very good (because I was very good at keeping him occupied for the 2 hour trip). And Aiden, well, he enjoys making everyone on the plane nervous by fussing and kicking and crying...until the second that we pull away from the gate when he literally falls sound asleep. We always get "Wow, he was so good" comments when we land - probably because they were doubting it and grumbling under their breaths about having to fly with a cranky baby at first.

Once we landed at DFW, we picked up our friend's Honda Pilot left for us in the garage (how cool is that of them?!?! Thank you Gorman's!) Then we headed straight to Medical City for the first of Aiden's many appointments.

First we saw Dr. Kolar - the anthropologist - who took numerous measurements of Aiden's head and face. These measurements show growth patterns and change since his latest surgery, the cranial vault in May. It tells his doctors just how much the surgery helped (how much additional room was created for his brain to grow).

Next stop, media and photography. Photos are taken at each of our trips to Dallas pre- and post-surgery to record the growth and development of his hands, feet and head.

Then we saw Dr. Hung, the ENT, for a follow-up check from the tube placement he had during the cranial surgery. He confirmed that the tubes were still there and doing their job. All else looked well.

Finally, we met with Dr. Fearon, his fellow, and a visiting surgeon from Great Britain. We discussed his post-surgery progress and also plans for future visits. He said his incision healed exceptionally well and the forehead placement is near perfect. I had emailed him a few weeks ago about the fact that it seemed his left brow bone was a little lower than the right, and he noticed this right away during our visit. He said that he would fix it, a minor correction, during the next procedure. Which brought us to discuss when the next procedure would be...

Dr. Fearon said that with annual checks being the final determination of treatment plan, he didn't forsee any need for surgery until Aiden is about 5 years old at which time he will most likely require a posterior cranial vault - the same type of surgery he just had, however opening the back of the skull rather than the front.

Around the same timeframe, we would also be looking at scheduling his midface advancement using the RED (rigid external distraction) system. And he will also straighten his right index finger at that time as well.

So for now, it looks like we can rest easy for the next few years. Our only trips to Dallas will be for check-up visits for sleep studies and MRIs. The results of each will show if there is any need for the abovementioned surgeries to happen earlier than previously thought. We will return in February, then once a year thereafter. Great news!

After all the appointments were over, we met up with April, John and Rory Cate for dinner and playtime at the mall. Ethan and Aiden were completely exhausted - which meant they were not on their best behavior. We were able to squeeze an hour or so more out of them before heading back to the hotel where they both collapsed into their beds upon arrival.

The next morning, we went back to the mall (I mean come on, who needs to sight-see when we can go to Baby Gap?) From there we went to Great Wolf Lodge in Grapevine, TX for the start of the CCA retreat symposium. There were 4 sessions on Wednesday with talks by a clinical psychologist about Family Dynamics and Teasing, and by Dr. Fearon and Dr. Sacco (the neurosurgeon who worked with Dr. Fearon on Aiden's cranial vault) about Treatment of Craniofacial Disorders.

Afterwards we went back to the hotel for some pizza and swimming with the Gorman's. (I will upload pictures soon!)

Thursday morning it was back to Great Wolf for the conclusion of the symposium, lunch at Rainforest Cafe, then to the airport for our return to Northern Kentucky. It was a jam-packed 3 days that's for sure! I got to meet some amazing families at the symposium - kids with Aperts at various stages of their treatment (one little girl had just gotten her RED removed that week!), kids with Crouzon and Pfieffer Syndrome, Treacher Collins, frontonasal dysplasia, etc. It was a wonderful experience and I look forward to participating in the entire retreat (not just the symposium) next year in Boston.

And, 0nce again, I want to send a huge "Thank You" to April and Tate for their Texas hospitality. I can't wait to have them come visit us in our neck of the woods in the future!

Family pics

As an early Father's Day gift, I scheduled a photographer to come to the house on Monday to take some family pictures. We haven't had any done in a while - Aiden was 3 months old the last time - and now that he is finished with surgeries for a while, I thought now was the perfect time!

The photo shoot was a little hectic as the boys were as hyper (and uncooperative) as ever. So we really didn't know if we were going to get any good shots. After all pics were taken, our photographer, Leslie Elder, said she would have all of them edited and put onto a DVD for us in about 1-3 weeks.

Well...we were so anxious to see if our efforts were a waste of time or not (and of course we...er, I should say Ricky...isn't the most patient person in the world) so I sent her an email yesterday to see if she could send us any of the "unedited" pics to hold us over. She delivered! She had already started to edit - and sent us some of her favorites so far.

I will be sure to update with all of the pictures once we receive them :)

Here comes trouble!

This time, I'm not actually talking about Ethan ;) Aiden has hit a milestone that for some, was probably hit a little earlier than 16 months old. But considering all that our little man has been through - this is quite the accomplishment - and another way he is showing us that he is going to catch right back up to where he needs to be.

Aiden started pulling himself up on furniture this past weekend. Any couch. Any chair. Any table that is within arms reach. His awesome hands have grown less and less sensitive and he is discovering all of the cool things he can do with them. He is crawling faster than fast. He is cruising across the coffee table to reach for the remote control if left mistakenly unattended. He is slowly but surely figuring it all out. Before we know it he will be walking.

I'm definitely a proud mommy. I mean, how many other parents can say that their child can undergo 4 major operations in the last 7 months, starting at the age of 9 months old and the last one being just a month and a half ago, and already push himself to do things that some have told us would take months and months to do. He is a constant inspiration in my life and I know many others.

As for Ethan, I think his role as a big brother will only help Aiden in his development. This child can speak in full sentences and tell me stories that if typed would consist of 3 or 4 paragraphs. He has a memory that extends far beyond mine (I'm talking remembering something somebody told him 2 months ago or a moment that occured before I even realized he could remember things).

One of his very favorite things to do is read books. At a birthday party a couple weeks ago there was a huge castle bouncy house. What was my two year old doing? Sitting inside the bouncy reading the book he made me bring in from the car. Seriously.

I won't go so far to say that he is a genius...okay yes I will. What a role model and motivation Ethan will be for Aiden. Although we are well aware that Aiden may follow in his footsteps at a different pace than Ethan's, we will never be the parents that will baby Aiden because of his diagnosis. He will be treated just the same and pushed to be the best Aiden that he can be. Period.

(Okay, okay, those of you who really know my little Tazmanian Devil know that Ethan isn't all "book worm-nerdy-nerdy". This kid has spunk. And more energy than, God I don't know - something that has an exorbitant amount of energy. But isn't there some study that says that really hyperactive kids usually turn out to be super smart??)

Anyway...a lot going on in the next couple of weeks. Including (but not limited to): trip to NKY this weekend, 6-week post-op visit to Dallas next week with both boys and my mom and sister, overnight girls night with my friend Audrey in Owensboro next weekend, trip to Michigan the following week...and on and on and on. It never stops! And I love it!

Fun in the sun

The ninety degree weather called for some serious pool time outside - and gave Ricky and I the perfect outlet to clean out the garage (which so desperately needed it).

I don't have pictures of the garage, but I do have some pretty cute shots of the boys in their awesome new pool...

CCA Benefit planning off to a great start!

Several of my closest friends and family members have come together to me help plan a benefit for Children's Craniofacial Association in Aiden's honor. CCA is a wonderful organization that provides resources and financial assistance to families affected by craniofacial conditions. We turned to CCA when we were first coming to terms with Aiden's diagnosis at birth, and we've been involved with them ever since.

Over the last 16 months, I've had numerous people ask how they can help our family. We've been very fortunate to have people help with watching the kids when needed, make us meals, and even donate frequent flyer miles to help reduce some of our travel expenses for our many trips to and from Dallas. Furthermore, Ricky works for a company that has an AWESOME benefit package and many many caring individuals that have personally helped alleviate much of the mounting medical bills that we face. And although we still worry about paying for his many surgeries and struggle to continue to make things work on one salary (I quit my job to take care of the boys full-time after Aiden was born), we know how lucky we are. We want to ensure that other families - those that may not be as fortunate - can always turn to CCA to get the medical, financial and emotional support that they may need for their child.

So, I know that many of you have already opened your hearts, given your time and energy and reached into your pockets for us, but if you want to do more, this is your opportunity!

First of all, circle the month of September 2010 on your calendar and keep your Saturday's open because we hope to have all of our loved ones - all of the people that know and care about Aiden - attend the Silent Auction Dinner that is currently in the planning stages. Once we have a date confirmed, I will let everybody know.

Our fundraising goal for the event is $10,000. I decided to start our efforts now by creating a FirstGiving page where anyone can donate online starting today. Please visit Aiden's page: www.firstgiving.com/aidenskees and donate as much or as little as you can. Seriously - $5 or $500 - the dollar amount doesn't matter. Your thoughtfulness and contribution in any amount means the world to us!

In the meantime, I will continue to post updates as the plans for the Silent Auction Dinner become more concrete.

Thanks everyone!

Day with Thomas

We visited the KY Railway Museum on Saturday for a Day out With Thomas. It was such a good set up, I'm sure we'll be back in the coming years.

Almost missed our 9am train ride - the ticket receipt showed my online ORDER time of 9:32 and I thought that was the ride time. The site said to plan to arrive atleast an hour before your boarding time, so we packed up the car and hit the road for the hour+ drive around 7:30am (hey, I was impressed we got ourselves and both boys dressed and out the door that early).!

We got there about 8:45 and I started to look at all of the different activity stations with the boys while Ricky went to check-in for the train ride with time to spare. Suddenly, I look up at him frantically waving me up to the loading deck. The ride was at 9:00! So I'm holding Ethan's hand and pushing Aiden in a stroller at the same time while rushing up to load onto the train. We were the very last ones - and the "conductor" rolled his eyes as we handed him our tickets - but we made it!

Surprisingly, Aiden seemed to enjoy it more than Ethan. We were in a dining car, so we had a table with four chairs. I sat Aiden up on the table so he could get a better view of the passing scenery out the window. He kicked and laughed and pointed the whole time. I don't know if Ethan was just too overwhelmed by it all (I mean we WERE riding on THOMAS!) or if he just didn't care for it, but he just kind of sat there taking it all in.

After the 25 minute ride, we made our way around each of the activity stations - toy train table play area, giant bouncy castle, meeting Sir Topham Hat, putt-putt, and of course, the Thomas Store. If you have small kids, I highly recommend making the trip when Thomas comes to the local station near you! We had so much fun! Click here for more pictures from the day.

Oh how I LOVE the terrible two's

So I wrote a post on my other blog just last night about some of the sweet moments that make this motherhood thing worth it. I'm so glad that I got all of that out of my system then - because today was an entirely different story.

Ethan has been fussing around the clock about - brace yourself - his tongue. Apparently he must have bitten it on Monday and although I know it smarts like no other, he's really milking it for all it's worth. And it's driving me CRAZY. I mean besides the fact that one of the most annoying sounds in the world is a 2-year-old's constant (and ever so fake) whining, I look at him in his meltdown mode then glance over at Aiden with his 4-week old incision running across his skull from ear to ear, ten fingers and ten toes with scars that show there were once none...and a huge toothy grin as if he hasn't undergone 4 major surgeries in the last 7 months.

At that moment, I just can't help but think to myself "come on Ethan, seriously? It could be SO MUCH WORSE"!

Instead of laying the guilt on him, I simply tell him for the millionth time that his tongue might stop hurting if he stops putting his fingers in his mouth to pull on it. We go about our day.

At some point I survey the situation and realize that both boys are contentedly playing on their own. I make a break for the bathroom for the first time that day so I can finally relieve my bladder. Just 15 seconds - that's all I needed.

And that was all Ethan needed to reach across the baby gate, open the "art" drawer in the kitchen, remove a red crayon and drag it across the beige family room carpet. Awesome.

Did I mention that our realtor called today to let us know we have a showing on Saturday?

I spent the next few minutes online frantically Googling "how to remove crayon from carpet" and calling my mom to tattle on him. I decided baking soda and my Hoover SteamVac were my best bet...it worked like a charm! Thank God!

Fast foward through the multiple time-outs and many renditions of "I Love You, You Love Me" (see link to other blog above) to dinner time. We made Ethan his usual favorite of chicken nuggets and crunchies only to have him go into total meltdown mode once again. "My tongue hurts mommy! It hurts!" I dutifully inspected it - but upon finding no evidence of ANYTHING, I started to get all "eat your dinner or you're going to bed without any" on him.

Suddenly, guilt started to set in. I began to wonder if maybe he had some rare tongue disease that wasn't detectable by the human eye. I could see it now. Here I am getting super frustrated about him being such a baby about his darn tongue when really it would turn out that it was infected and would now have to be removed due to the fact that I didn't care to investigate further with a simple trip to the pediatrician.

So you can guess where we ended up tonight. The pediatrician's office. It's pretty bad when I don't even have to give my last name over the phone to the nurse. She either knew my voice, or they have my phone number flagged. Either way, I feel like we live at the doctors office. I actually joked with the staff that they should make a portion of the waiting room into an apartment for me and the boys. It would definitely save me many trips!

Anyway - horrible tongue disease it was not. In fact, he is the picture of health. Ears look great. No temp. Throat is clear. I would have appreciated it so much if the doctor would have just said "He's just being a pain in the ass" like I know she wanted to.

I'm pretty sure that being terrible sometimes comes with being 2. I just hope that we both survive it. T-minus 9 months...and counting!

Staying busy...as usual

Had Aiden at the pulmonologist yesterday for a follow-up from his bug in Dallas. Dr. Morton is happy with how Aiden is doing. He was a little snotty at the appointment, but nothing that seemed to be anything more than allergies according to him.

After the appointment, Aiden conked out in the car so I drove around for the next hour until my lunch meeting to discuss the CCA benefit I'm planning. I knew if he didn't have his nap, the lunch meeting would be pointless.

He was very good at lunch. But as the day wore on, he went downhill. Snot began to pour from his nose like a faucet. Green goopy stuff secreted from his eyes. His temperature shot up. And then he gagged on phlegm and vomited ALL OVER the family room. I called the pediatrician and made an appointment. Turns out he has a double ear infection and conjunctivitis. Fun!

He's doing a little better today (a little less green goopy eye gunk and a lot less snot) - but he is now on seven...count them...SEVEN different medicines on a daily basis. Seriously? Give this poor kid a break!

In other news, our schedule is jam packed as usual. I don't think we have a free weekend for the forseeable future. It certainly keeps life interesting!

A glimpse at the month to come:

• We're taking the boys to the Day Out With Thomas on Saturday morning, then heading to a friend's little girl's 1st birthday party in the afternoon
• First girls night/bunco next Thursday (yippee!)
• A friend's wedding on the 13th (glad to see one of Ricky's high-school friends FINALLY getting married!)
• A trip to NKY the following weekend, then leaving from there for Aiden's 6 week post-op visit in Dallas for 3 days
• Mommy's day/night out with Audrey in Owensboro (another yippee!) the weekend we get back from Dallas
• Leaving (with the boys) for a week at our family cottage in Michigan the last week in June

July doesn't slow down much either! What can I say - we're a busy busy busy family!

Finally! Updated pictures of the boys!

I was way behind on uploading and organizing photos from the past couple of months. But I finally got around to it. Enjoy!

• Ethan's 2nd Birthday party
• Aiden 13 Months
• Aiden 14 Months
• Aiden 15 Months (these are all post-op pics by the way, so you can see how his head is healing so far)
• Ethan: March-May

PS - Aiden is doing great! He STILL has the stitches in each corner of his eye as they have yet to dissolve. But despite it all, he's back to his old self. It's amazing to me that with all he has gone through, his personality is as vibrant as ever!

Our 4th Anniversary

Everyone has been asking me what sweet thing Ricky planned for our anniversary this year. He's known to be quite the romantic and is usually doing something creative for special occasions like this.

Well folks, he lived up to his expectations! He planned a horseback riding adventure at a ranch near French Lick, IN. We dropped the boys off at his parents early in the morning so we could make our 10am ride time (it's over an hour away). There was supposed to be another couple coming along, but they canceled that morning so it was just the two of us (and our guides of course).



It was so beautiful! The Ranch was over 1100 acres of rolling hills, trees, pasture and trails. My horse was "Twillow" and Ricky's was "Ginger". We both did really well - only walking, no trotting was allowed. We had a wonderful time.

Afterwards we had lunch (alone! no kids! gasp!) and headed to the Marriott downtown Louisville to check in to our room. We love this hotel - and we chose it not only because we stayed there the night of our wedding, but because they have great service and very nice, comfortable rooms. (Oh yeah, and also because we can stay for free using our Rewards points).

When I made the reservation over the phone I asked about getting some kind of upgrade. They told me to ask at the desk when we were checking in. So when we arrived, I mentioned the possibility of a complimentary upgrade since we were celebrating our anniversary.

She put us in a beautiful suite and once we were in our room, a tray of chocolate covered strawberries and a bottle of champagne was delivered. Yum! (Along with a hand-written note wishing us a happy anniversary and many blessings in years to come. See, now that's good service!)

We walked to the Bats game, had dinner at Champion's and turned in early. Believe it or not, sleep was a high priority!

It's been a long 4 years for us - but our love has helped us overcome many of the obstacles along the way. God sure did know what he was doing when he brought Ricky and I together! I'm looking forward to many many more anniversaries to come!

Scooby dooby doo!

Ricky and I took Ethan to King's Island last Sunday for a special day with just mommy and daddy (we try to do this often since we spend a lot of time caring for and out of town with Aiden). He was so good and truly loved every minute of it. We got there early enough that we rode about half of the rides in Kiddie Land without waiting in a single line. That's the way to do it let me tell you!

Ethan is a very "lovey dovey" type kid - so every time he saw a different life-size character (Dora, Diego, Spongebob, etc.) he would yell "Hug her" or "Hug him"! He'd take off running, and practically tackle them, totally oblivious to the parents who were snapping their child's picture with said character. I'm assuming they preferred to have just their child in the picture...but alas there are tons of families out there that now have shots of their adorable kids with Dora...and my sweet little Ethan squealing with excitement in the background. Sorry :)

Anyway - here is a cute one of E with Scooby. We ended up shelling out an exorbitant amount of money for it (I will never forget our camera again)! But we couldn't pass it up.


PS - lots more updates on Aiden, including pictures, coming soon!

Getting caught up

I've already written about the Gorman's and how much they've done for us during our trips to Dallas, but I haven't had the chance to post the pictures from our get together at their house. It was an awesome day for us - they welcomed us into their home where we were able to hang out and relax a few days before Aiden's cranial surgery. I've said this a million times, but each time I'm with them I feel I have to say it again...we've only met each other a couple of times, but our time spent together is so effortless that it feels like we've known them for years.

First, we just let the kiddos crawl around while we took pics. Then Tate made margaritas for the ladies (yay!) and we decided what to order for dinner. While we fed the kids, the boys went to pick up our take-out (I decided Mexican). John reminded me so much of Ethan as he began discarding his unwanted food onto the floor much to April's dismay. And Rory Cate wriggling in her highchair as April cleaned up John's mess again brought that familiar feel of home. There was no pressure of trying to keep the dinner table clean like if you're at a kid-less friend's house. It was all very natural. Comfortable.

They gave their kids a bath, got them in their jammies and settled them in bed. There was no rush - we know the routine well. And although it was probably very monotonous for them, it was then that we started to remember why we were there and began to wish for our own monotonous routine at home once again.

April set up their pack n' play for Aiden and we changed him into his jammies as well, laying him down with heavy eyes. For the next hour or so we were able to eat our dinner and get to know each other better. When Aiden started to stir, we headed back to the hotel for the night.

With Aiden's surgeries out of the way, I truly can't wait to head back to Dallas in June. Fingers are crossed that Ethan is well this time around and we can get together as planned for a "rain check" with April, Tate, John and Rory Cate. I know that we have great friends in this family and I look forward to many more get-togethers with them in the future!

During our trip, we were also lucky enough to meet up with the Hurd family from Shreveport, LA. Anne and Sean have a son, also Aiden, with Apert syndrome. Their Aiden is almost 10 months old and had recently gone through the cranial surgery that our Aiden just had. We've been in touch through the Apert listserv and following eachothers websites so it was nice to finally meet them in person. It is amazing what the internet can do to bring people together!

I can't say enough how absolutely adorable their little boy is. He is living proof of how well these kids bounce back from major surgeries - crawling around like crazy, happy as can be. And his parents are also a testament to how strong couple's can, and do, become through the tough times. Nobody asks for this journey. We don't know about it in advance. But it is the ones that choose to embrace it and give it everything they have that truly inspire others to do the same.

Thanks for meeting with us Hurd's! I hope we stay in touch!

Finally, the boys are both doing great. Aiden's eyes continue to open gradually. We are finally starting to see what he is going to look like as the swelling goes down. It is still hard to gauge at this point because Aiden's big beautiful blue eyes aren't like they normally are, but I'm coming to terms with the differences in the shape of his head/forehead. Seeing his personality emerge through the brusied skin only highlights how strong he is and how much I love him!

Ethan has been so sweet and gentle with his little brother the past few days. It makes me hope that we are actually doing a good job raising him to be a smart, compassionate human being. There is nothing I love more about being a mom than him running up to me in the middle of the day and for no apparent reason throwing his arms around my legs saying "I love mommy". It reaffirms this whole motherhood thing ten fold.

And as if we haven't taken on enough in the past few months, I'm going to add another huge task to my list. A good friend of mine from college (and old roommate), Anna, has offered to help put together an event to raise money and awareness for Apert syndrome. We've started to gather ideas and are hoping to organize a silent auction/dinner type event to benefit the Children's Craniofacial Association. We already have a lot to work with - so I'll keep everyone posted as we develop this further. I'm counting on my friends and family to participate!

Other than that things should be relatively calm with the Skees family in the coming weeks. (Aside from me starting a new job, several family/friends weddings, Ricky picking up more responsibility at work and STILL trying to sell our house). But hey, we're used to it by now!

I see you peekin'

Sorry for the delay in updates - yes, we are home sweet home. Our trip back from Dallas was uneventful. Thank goodness.

We got a few looks and stares at the airport as we had expected, but I'm guessing most people could tell that he must've just had some kind of surgery (you know, rather than thinking that we beat our child or something). We tried to avoid having to wake him up and take him out of his carseat to go through security - pulling the whole "look, he just had major head surgery..." but thanks to the 9-11 terrorists, the supervisor just shrugged and said "sorry, he's got to come out of there".

When we got in to CVG, Nana and Ethan met us at the airport. We were so happy to see him feeling better and back to his normal high-energy self. And from the speed of his little legs pumping to run towards us at baggage claim, I could tell that he missed us too.

Ricky's friend Jason is about to be married in June and was having his bachelor party in Cincy that night. So we went straight from the airport to drop Ricky off downtown to meet up with his friends. He deserved the night out after the long and stressful week.

We celebrated Mother's Day on Sunday with my family then headed back home in the evening. My boys gave me custom made plates that they drew on with permanent markers. Soooo cute. And some flowers. Ricky gave me a certificate for a pedicure.

As for how Aiden is doing - his swelling is going down by the minute. His eyes started opening on Monday morning...ever so slightly. When we went in to get him out of bed they were just open a little sliver. Now, Tuesday evening, both are open about halfway, but the stitch in the outside corner is keeping them from fully opening. As soon as the stitch dissolves, they will open all the way.

Despite not being able to see normally, Aiden is back to his happy-go-lucky self. He's crawling all over and as smily as could be. Have I ever mentioned how amazing he is? :)

Ethan is aware of Aiden's "boo-boos" and the need to be extra careful with him. He loves his little brother so much and can't wait to start pushing him over or laying on top of him to smother him with hugs again.

So now, with Aiden's surgeries over for at least a few years, we're focusing our energy on selling our house and enjoying the nice spring weather as much as we can.

I want to thank everyone once again for the thoughts and prayers throughout last week. We're so thankful for the support we have from friends and family.

I have so many more pictures to upload - including our visit with the Gorman's, meeting the Hurd's, and Aiden's unswelling progress - so check back soon!

Out of the hospital!

Yay - we are all back to the hotel, but not after making a true Skees "always complicated" exit.

The nurses helped us wash Aiden's big ol' noggin to get the incision site really clean. Of course he was not a happy camper through that whole event. He was tired, hungry, unable to get his bearings with his giganto head and just plain unhappy. After the quick head bath, we dressed him and let him drink his milk before we strapped him into the stroller.

He INHALED his milk. Probably not a good idea to let him drink so much in hindsight.

Anyway, we were very anxious to get the heck out of there so once in his stroller, off we went. We were so close to smelling fresh air - made it down the elevator and almost to the exit when up came the milk...and then some.

We screeched to a halt and turned back around. Back upstairs to our newly vacant room we went. Round 2. Stripped him down, wiped him off, Cloroxed the smelly carseat and headed back out before someone could make us stay.

We're all very comfortably resting now. Ricky is feeling better. I haven't gotten hit with it yet (now taking Tamiflu to prevent it). And Aiden is visibly more comfortable on the cushy hotel bed than he was in the hospital attached to 18 different wires from various veins in his body.

Only thing is, with his eyes swollen shut it's hard to tell when he is awake and when he is asleep! :)

More swelling

If that is even possible. How much more can his tiny face take? It is hard to see my baby boy like this, but he has been very peaceful and content. How I'm not sure - can you imaging going through this yourself??? I know I would be ANGRY!

April came to visit Aiden today and brought him a balloon (and a little Cookie Monster for Ethan). It was nice to have a friendly face here - especially one that has been through this exact same surgery about a year ago. She kept telling me how good Aiden looks. I had to laugh and just say that I'd take her word for it since she has seen her own son in this same situation. Because looking at him, I'd never imagine to say/think he looks good!

Ricky is back at the hotel resting right now. It seems he's picked up a bit of a bug as well. I'm hoping I can stay well for our trip home.

I posted some more pics - but beware - what you see does not even look like Aiden as you know him. As difficult as it might be to see him this way, please know that it is all very normal post-op swelling. It will peak tonight and then start to decrease as the days go on. However it could be several weeks until all of the swelling and retained fluid is completely gone.

My poor Aiden looks like a gremlin

We knew that he would be a lot more swollen than when we last saw him yesterday (more on that below), but it was quite shocking to see the transformation. His poor head is stretched like a balloon that looks like it is about to burst. His expanded skin is smooth and shiny. His eyes are beginning to bruise. It looks as if he got into a fight...and lost...big time.

Yesterday afternoon, Dr. Fearon came by to see Aiden. He suggested that Ricky and I take the night off to go have dinner, a glass of wine and to get a good night's sleep saying that while Aiden is in the PICU, he's got the best babysitters he'll ever have. Without his mentioning it, we probably never would have done it - our plan was for Ricky to stay with Aiden since I had the night before - but we decided that we must've looked like we needed the rest. So we did just that. (Although we probably annoyed the nurses by calling in to check on him as often as we did!)

Feeling refreshed, we got dressed, ate some breakfast and headed back to the hospital. He's snoozing right now, but he has been doing very well overall. He's drinking milk again and I'm going to try to get him to eat some solids - I just ordered him some yogurt and mashed potatoes to see if he wants something hot or something cold. His oxygen levels are holding steady at around 98-100 on room air so that is excellent! His pain level doesn't seem high and it is being managed with regular Tylenol so far. He is a trooper!

We should be moving to the regular floor as soon as they have a room available for him. Then, if all continues on this track, the plan is still for Aiden to be discharged tomorrow after Dr. Fearon comes by to see him. Our flight is on Saturday, so we'll have one night with him at the hotel before heading back to my parents house.

Thanks again for all of the good vibes being sent our way - they're working!

Little Fire

My little man Aiden amazes us more and more each day. He pulled through his surgery with flying colors despite his current illness and our complete despair over whether or not to send him into surgery in the first place.

Dr. Fearon and Dr. Sacco met us in the waiting room and discussed how the procedure went. Overall, they said it went without a hitch. He went under anesthesia just fine. He didn't lose an abnormal amount of blood which meant no need for a blood transfusion at this point - and as long as his body "reproduces" the blood it lost in the next few hours, there will be no need for one during his recovery. He did have an episode of wheezing during surgery, however the anethesiologist was able to remedy the situation with a quick albuterol treatment to open his airways.

We were quite relieved to hear that it all went so well - but still quite anxious to see our little guy as we waited to be called back after they settled him into his room.

Finally, and admittedly less terrified than I thought I would be, we got to see the miraculous change that came with this surgery. Although Aiden was very puffy from post-op swelling, it was not as difficult seeing him as I had anticipated. He does look different. It will be a more noticeable change for most until all of the swelling subsides. But even after that, the physical differences will not go unnoticed by us, his parents. At first I thought it would be hard for me to come to terms with what I would be seeing. I guess I have been once again blessed with the strength to focus on what is most important - Aiden needed this surgery. Period.

Dr. Fearon did say that once the incision was made from ear to ear and the skin was pulled down to expose the dura (the thin layer covering the brain), it was very apparent that his brain needed the extra room. It was growing quite tight in the space surrounding the closed suture. A great weight was lifted off of our shoulders when we heard this. Doing this surgery now was one of the best decisions we ever made.

Aiden is one tough cookie. As I watched him laying in his bed with swollen cheeks and puffy little eyes I decided that his name was the perfect fit. You see, the name Aiden means "Little Fire". The comparisons go beyond his red-tinged hair. He is a fighter and despite all that he has endured, his bright disposition has been proven difficult to extinguish. His light burns bright. His smile spreads rapidly and melts your heart. I can only hope that Aiden will continue to be a spark of inspiration for the many people who are lucky enough to know him.

Click on the below links for more pictures from the past two days:

• Pictures before surgery
• Post-Op pics

Surgery update

Things are moving right along with Aiden's surgery. They started the operation around 9am and we have been calling the OR frequently for updates.

I know I've mentioned it in older posts from previous visits to Dallas, but the waiting room here at Medical City is equipped with a pretty cool patient update system that lets you track surgery progress on a large flat screen television. It lists each of the patients names (using only certain initials for privacy), and indicates what portion of the surgery/recovery they are in and at what time it began. Once it shows that they are in the OR, a scalpel appears when the first incision has been made. That changes to a stitch pattern and finally a bandaid just before they are moved to recovery.

All of Dr. Fearon's patients are also given a direct number to call the OR at any time throughout the procedure and as many times as we want . One of his nurse's answers the calls and gives us real-time updates.

So far so good - Aiden is doing just wonderfully and the surgery is going well. Should be another 2 hours before it is complete.

Aiden is in surgery

Despite having to be on oxygen all night long, Aiden slept really well. We moved to the surgery holding area bright and early in the morning and awaited evaluation from the anesthesiologist, Dr. Blakely. She listened to his chest, watched his oxygen levels and determined that although conditions were not optimal for surgery, based on those factors, she felt that moving forward was alright. More importantly she said that having 4 children herself, if she were in our shoes, she would go ahead with it.

After lots of praying, hugs, kisses, tears and holding on to him tight, we let our baby go. I know he is in good hands - and that God will bless the hands of the doctors that are caring for him. I know life is never black and white. I know that no matter what the situation was with Aiden's health, sick or well, there are always risks involved with any surgery. I know all that. But hearing the words "possible lung failure" and "severe respiratory distress" due to complications from his bronchitis during surgery didn't make it a very easy pill to swallow. And it definitely didn't make letting go of his soft sweet skin any more bearable.

It is now 8:35 in Dallas (central time) and Dr. Trone (ENT) just came out and said that his portion went smoothly - Aiden had tubes placed in his ears first and then they will begin the cranial vault. He told us that he went under fine and without complication. No wheezing. Breathing fine. Good news.

Ricky and I are going to grab breakfast and then set up shop back up here in the waiting area for the remainder of the surgery. We have been told the surgery should last about 4 hours, give or take. I'll update later.

It's gonna be a looooong night

I'm not sure this day could have gotten any worse. The only thing that even validates the hell we've been through today is the fact that I can look over at my sweet little boy as he snuggles into his blankie and flashes me a smile through the bars of his hospital crib.

Yep, that's right, I said hospital crib. If you read my earlier post that laid out the itinerary of events for this week, you would know that a hospital stay on Tuesday night was not on the agenda. Plans change. And boy oh boy it's frustrating.

Aiden started getting the sniffles on Sunday evening, the night before our flight to Dallas. We phoned Dr. Fearon to mention it to him and see if he was concerned at all and whether or not a cold would effect the chances for surgery to take place as scheduled. He said it shouldn't be an issue. We were reassured.

It seemed that his case of the sniffles had morphed into something more the second the plane skid into the gate. A little coughing here and there. Drippy nose. Was it allergies? Change in weather/enviorment making his cold act up? If only.

His cough picked up throughout the day on Monday - but we still convinced ourselves that it was nothing major. I'll go ahead and tell you it was NOT the ever-dreaded Swine Flu...er, I mean sorry, the H1N1 virus...instead, it is bronchitis.

I'll spare you all of the details that made the next few hours JUST PLAIN MISERABLE, but will tell you it involved each and every one of the following (not necessarily in this order): language barriers with doctors and/or nurses, miscommunication all around, poor little Aiden getting poked not once, not twice, not even three times, but FOUR times to draw blood because of a nurse and laboratory staff error, IV coming undone, blood all over the floor, and dropping oxygen levels.

Long story short, Aiden is now on oxygen, FINALLY sleeping like a baby despite vitals being checked every hour and respiratory therapists coming in to administer breathing treatments every two hours.

The remaining doctor visits that were scheduled as part of our pre-op appointments were done in the hospital room earlier this afternoon. Dr. Fearon (the craniofacial surgeon), Dr. Sacco (the neurosurgeon), and Dr. Trone (the ENT) came to the room for their consults. They all seemed pleased with how Aiden looked. However the consensus is that the decision on whether to proceed with surgery will be made first thing in the morning based on how he does tonight. As nervous as I am about this surgery, I really want to have it done tomorrow rather than be sent all the way home only to have to return for surgery at a later date to be determined (and to again anxiously await it and re-prepare myself for it a second time).

Please say some extra prayers that this all works out and Aiden is healthy enough to move forward with surgery as planned.

I will update when I know more tomorrow.

Everything's bigger in Texas!

We've arrived in Dallas without any troubles at all...and without two of our passengers too! Turns out Ricky and I had to make an executive decision for Ethan to stay behind at Nana's house (which meant Nana stayed behind too), because on Sunday he was running another fever and ended up throwing up later in the afternoon. We were all extremely bummed.

It was so very hard to leave my little guy (and my mom, my best friend) behind. We were so looking forward to marking this surgery, one of Aiden's last for several years, with a "family" trip to actually enjoy some of the sites of the Dallas area rather than just seeing the bland, stifling walls of the hospital the entire time.

And one of the other main reasons we had wanted to bring Ethan along this time was because we had planned on having a "play date" with our friends, the Gorman's, and their two kiddos John and Rory Cate. John is Ethan's age and I'm sure they will be fast friends...when (and if) they finally get to meet!

Speaking of the Gorman's, they have really outdone themselves this time. They have single-handedly given truth to the phrase "Everything is bigger in Texas" - especially when it comes to hearts. Not only did they graciously allow us to use their car again, leaving it at the airport for us to pick up when we arrived, they, along with some of their dear friends, pulled together a GIGANTIC amount of goodies for our stay. Our countertop and fridge are full of snacks and drinks for both Aiden (Crunchies, crackers, juice) and Ricky and me (homemade cookies, chips, fruit...beer/wine).

And in addition to things that will fill our tummies, they also included toys and books to help pass the time, and lovely notes letting us know that half of Texas was thinking of us! We feel very "at home" surrounded by it all.

A Texas-sized "Thank-You" to all of the awesome families that helped to make our stay a little brighter!

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The week's schedule is as follows:

Monday - arrive in Dallas, dinner with the Gorman's

Tuesday - pre-operative appointments throughout the morning and afternoon, then relax at the hotel in preparation for our early wake-up call

Wednesday - be at the hospital by 6am, surgery scheduled for 7:30am (will last approximately 5-6 hours), spend night in the PICU during recovery

Thursday - hopefully be moved to regular pediatric floor for the night

Friday - possibly discharged, but may stay one more night for monitoring

Saturday - fly back to NKY

Sunday - spend Mother's Day with my family before heading back home

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++

We also want to let everyone know that the emails, comments, cards, texts, messages and mail that we've received these past few days means more to us than you can imagine. Your encouraging words, thoughts and prayers really help lift our spirits and help us to keep a positive attitude. We appreciate each and every one of you - friend, family or stranger!

Please check back throughout the week (and several times on Wednesday I'm sure) for updates. I'm off to try and get a little nap while Aiden snoozes too!

Love, The Skees

Next week

On the heels of the crazy weekend, we're also starting to get anxious about our trip to Dallas next week.

I have been having a hard time thinking about Aiden's upcoming surgery. Dr. Fearon assures us that in comparison to the previous operations, the procedure and recovery for this one is much easier. I believe him. I do. But it doesn't make up for the fact that it is going to be much harder for me this time, emotionally speaking.

Aiden has undergone significant changes since he was born 14 months ago. His hands, once tiny little fists of uncertainty, have been transformed. He kicks and wiggles his soft smooth feet as if to show off his tiny toes. These changes were welcomed. The physical benefits outweighed any anxiety I had about the way my child would be changed forever. Even though I know the physical benefits of this next surgery, the anxiety is winning this time around.

The operation is two-fold. A cranial vault and a frontal orbital advancement. With Apert syndrome comes craniosynostosis, or the premature fusion of one or several sutures in the skull prior to birth. It can cause intra-cranial pressure (ICP) and can inhibit the proper growth of the brain. The goal of the cranial vault is to release some of the pressure (if it is present) and allow the brain more room to grow. The frontal orbital advancement involves, in a nutshell, putting natural material behind the brow bone to advance it forward about 2cm, which in turn provides greater protection of the eyes for these kids who tend to have more shallow eye sockets than normal. More detailed information about the procedure can be found on Dr. Fearon's website, here.

It all sounds pretty terrifying. And when Ricky and I were researching and visiting doctors after Aiden was just born, one doctor showed us photos of the surgery as it was in process. Let me tell you, it was terrifying. But aside from all of that, the thing that breaks my heart the most is that Aiden will forever look different. I'm told it won't be a huge change, and it may only be noticable to Ricky and I. But a change nonetheless.

He will be the same boy, but not as I know him now. His little face. Growing, changing ever so slightly as babies faces do when they get bigger. For 14 months I've looked into the same sweet baby blues, held the same round head full of fuzzy red-ish hair and wiped tears from the same silky soft cheeks.

I know why we have to do this surgery.

My head gets it. My heart doesn't. I'm not sure it ever will...

Please pray for our sweet little boy. And pray for our family during this tough time as well.

Crazy weekend

Last week Ricky and I were trying desperately keep our house clean for a showing we had during the week, and then for the Open House that was scheduled for Sunday. This is no easy feat with two active little boys under three!

My mom offered to meet halfway [between her house in NKY and my house in S. Indiana] on Wednesday afternoon to get us out of the house during the showing, and also to take Ethan back to her house. I was planning on going up there that Friday anyway as I was babysitting my sister's girls on Saturday night while they attended a wedding. Having Ethan stay with his Nana meant I could manage getting (and keeping) the house clean prior to the Open House.

With Ethan gone, boy oh boy did it remind me how much easier it was with just one kid at home! I sure did miss his kisses, reading him bedtime stories and tucking him in...but I didn't miss his mess! You see, I'd also forgotten what it was like to live in a CLEAN house day in and day out - something that is nearly impossible with Ethan here.

Anyway, I drove up on Friday, leaving Aiden at home with his daddy for the weekend. Saturday was spent at King's Island with my sister's girls, Lilly and Avery, my mom, my brother Jeff and his two boys Andy and Ben. We had such a blast. This year Ethan is (barely) tall enough to ride some of the smaller rides in Kiddie Land. Last year he could only ride maybe three, and he wasn't crazy about any of them. But this time he LOVED everything and wanted to do some of the bigger ones too!

Sunday, I packed up the car to head back home - but since we were having the Open House from 2-4, Ricky and I planned to meet at the Louisville Zoo with the kids for a little family outing. Ethan conked out the entire drive and just as I was approaching the Zoo exit in Louisville, he woke up. He rubbed his eyes, mumbled something under his breath and then began vomiting all over himself in his car seat. I was sitting in the left hand lane of a LONG two-lane line of cars waiting to get off of the expressway (didn't know until later that it was $1 Zoo day...) and didn't really have an "out" to pull over anywhere and comfort my poor boy. Not able to get across the lane into the exit ramp shoulder, the only choice I had was to merge back onto the highway and get off at the next exit. I jumped out of the car and got Ethan out of his puke-filled carseat. He was crying and burning up. After calling Ricky to tell him the zoo was a no-go, I called my mom in a panic and asked her what I should do.

Knowing that we couldn't have the boys around eachother as we are preparing to leave for Aiden's next surgery in Dallas next week and can't risk getting him exposed to something that would postpone his surgery, my mom offered to drive down to meet me and bring Ethan back up to here house until he was in the clear.

I made a quick stop at Walgreen's to buy a thermometer, Motrin and Pedialyte before getting back on I-71 to meet my mom. Ethan had a 102 temp. I gave him the Motrin and put a little Pedialyte in his cup. We ended up meeting at a McDonald's in LaGrange, KY. I took Ethan inside to change his diaper when I felt something on my foot. He puked up the Pedialyte and then some. Ugh. He was miserable.

It was heartbreaking having to send my sick little guy back with my mom. All I wanted to do was hold him and make him feel better. But I knew that it was what we had to do in order to prevent Aiden from getting whatever bug he had. And I also knew he was in good hands. He sure does love his Nana!

Ethan is no longer running a fever as of this morning and is able to eat like normal and keep everything down. So I'm looking forward to his return tomorrow when my dad brings him back home. There goes my clean house though! I enjoyed it while it lasted ;)

Easter 2009

HAPPY EASTER!
Our family :)


Me and Aiden

The goodies from the Easter bunny

Lions and tigers and bears...oh my!

It was a gorgeous day on Friday and so, feeling brave, I took the boys to the zoo. They were soooooo good and we had such a wonderful time. I definitely think we'll get our money's worth out of our zoo membership this year.

Ethan fell asleep before we even made it to see the elephants. Aiden put up a good fight, but he eventually lost that battle too on the way out to the car. I can't even remember the last time I was able to hear myself think (and listen to my music on the radio) for a full 30 minute drive! :)

Now that I know I can handle a four hour outing with the boys on my own, I plan on heading to the zoo many many times this spring and summer. Especially if Ethan continues to refuse to take naps at home like he's been doing all week. It seems a trip to the zoo is all it takes to pretty much guarantee a quiet ride home.

Click here for more pics from our zoo outing.

Coloring Easter eggs

This was our first year dyeing eggs for Easter. We had no major messes and the eggs turned out pretty good - so I'm considering it a success! This is one of the holiday traditions that I look forward to continuing with my boys year after year.

Aiden's "crawling"!!!!

Yes, Aiden is 14 months old and just now starting to crawl. But don't forget all that he has been through.

This is a huge milestone for us - and for him - who has previously been too afraid of hurting his sensitive hands and feet to put any weight on them to push himself up. We couldn't be more proud!

And oddly enough, his biggest achievement was prompted by a round of vacuuming. Now if you're thinking that once I switched on the vacuum he took off in the other direction, think again. He loved it! He wanted to get to it as fast as he could.

Looks like I'm going to have one clean carpet for the next few weeks! :)

I Heart Mommyhood: Ridin' the paci train...choo-choo!

[The below post is copied from my other blog: I Heart Mommyhood. I created More Skees Please to keep people up to date on our family, the boys, and Aiden's medical journey. On the other hand, I Heart Mommyhood is a tongue-in-cheek look at the joys of being a mother. I have chosen to make it public, while keeping some anonymity as a writer. I don't use my kids names or any specific personal information - it is merely a creative outlet to write about and share my experiences and frustrations with other interested readers. Feel free to check it out!]

Okay, so how many white lies have you told your kids to cover your tracks on the "basics" in life? I mean, really, you'd be lying if you said you didn't. Tonight was monumental. With the help of Thomas the Train and little babies under two everywhere, I was able to get my toddler to bed without a paci. Wait. I mean without a paci in his mouth and two in his hands. He went cold turkey everyone and I couldn't be more proud. Not since the day I went cold turkey from Marlboro Ultra-Lights in college.

It took a little coaxing. A few "but you're two and two-year-olds don't need pacis". Followed up with a couple "We gave your pacis to Thomas the Train to take to little babies who need them more than you". I know - I did feel just a tad bit guilty exploiting his age and favorite TV-icon to get him to give up his habit. But I'm only doing what's best for him. He'll understand when he's thinking more clearly. You know, in like three years or so.

My original plan to get rid of them was this charming little idea I found in Parenting magazine. Some clever parent decided to submit their story in the "It Worked For Me" column about how they tied their poor kid's paci to some helium balloons and let them go. Genius. I set a deadline of his 2nd birthday for our big balloon ride into paci-less freedom. It never happened. My fault completely. I will admit.

Letting go of this paci addiction is, I think, harder on the parents than it is on the toddler. The thought of more sleepless nights (if this is possible) and fighting on car-rides is too tempting. I have, up to this point, been an enabler for my own benefit. Does that make me a bad mother?

Okay - now stop. I'm normal. I hope. I hope I can say that all parents go through this very thing around two years of age (maybe even three, maybe four?) Maybe the balloon extraction worked for Mrs. Mommy-of-the-year. But for me, it took a couple of weeks of warming up to the idea before I could begin to think about implementation. And if he hadn't have fallen asleep after about an hour of rocking, book-reading and story-telling, my unsure hand was ready and willing to dig into the pocket of my pink robe and present him with the object that he so desired.

Thank you God for sparing me from continuing to feed his habit.

**Update** We are now 2 FULL DAYS without pacifiers! Next up...getting rid of the diapers!

Girls trip to Florida

Okay, if last night's post was any indication, I definitely needed some time away from all of the "tough stuff" I worry about on a daily basis. I try to stay positive about all of the things our family has on our plate - raising two kids so close in age, going from working full-time to part-time and then to becoming a stay-at-home mom, learning to understand Aiden's rare genetic disorder and becoming an advocate for his health and well-being - it is more than I ever bargained for when I thought about starting a family.

But as you saw, after being home from my lovely girls trip (aka "Mommy's mental vacation") just a few short days, the stress started settling in once again. I guess it would take much more than a one week escape plan to put out all of the fires we've got burning.

The week away, although entirely too short in my opinion, was a success for what we were trying to accomplish. My mom, aunt, sister, cousin, niece and I decided to pack our bags and head south for a week of refreshing ocean air, lazy days by the pool/beach and good company. We've all had our fair share of life stresses. So we jumped at the chance to put this trip together to get away from it all for a little while.

Although the weather could have been warmer, it didn't rain while we were down there so we were still able to enjoy a few *windy* days by the pool and in the sand. And the cooler temps were perfect for hitting the outlets and outdoor shopping malls.

It was hard for me to get used to eating meals without sharing, shopping without pushing a fussy toddler in a stroller, and being able to sleep 10 hours straight. Uninterrupted. And let me tell you, as soon as I got used to it, it was over! We had such a wonderful time and I don't know who benefited the most. I will say that each of us definitely needed (and deserved) to have this special "girl time". I just wish we could have stayed longer! I'm already day-dreaming about the opportunity for another get-away!

Once back home, reality set back in. We're trying to sell our house so that we can move to a subdivision close-by. I'm looking forward to living in a neighborhood for several reasons, but mostly because I've been feeling a little secluded on our 2.5 acres. Staying at home doesn't provide for a whole lot of adult conversation throughout the day, and even when we spend time outside, we have so much land between us and our neighbors that it isn't likely to "run into" other kids playing outside. Not like I did where I grew up. That is something that I want for my boys. I want them to be able to walk down a sidewalk to their friends house without the worry of cars racing by them on the street. I want them to be in a place where they can play tag in the culdesac until the street lights turn on and I yell for them to come inside. Most of all I want people to get to know my boys when they are little. It sounds a little silly but I feel like if we stay where we are now, then move when Aiden is a bit older, it will be harder for people to, I don't know, accept him. I feel like if we can settle into a family-oriented place where people can meet him in all of his baby-faced innocence, then maybe, just maybe it will help him to build lasting friendships that would be more difficult if he is thrown into a new group of people at an older age.

Anyway - these are just some of the things that we think about on a daily basis. I didn't mean for my post last night to sound so depressing. I just wanted it to sound honest. Going back and reading things from the beginning of my blog until now, I was shocked by how little I actually talk about the emotional struggles that we deal with day in and day out. I'm sure everyone can figure it out - I mean it's obvious that this is a rare situation to be dealing with. But I felt that I hadn't been totally forthcoming. I never want people to think that I sugar coat things. I want people to know that although most of the time, yes, we are very strong and we try to stay positive and we do love our life, the fact of the matter is that there are many days that I am scared out of my mind. Worried about my precious boys futures'. Stressed to the max from negotiating hospital bills, scheduling doctors appointments and all the while trying to tackle the ever-growing laundry pile.

So yeah, the trip to Florida was a much-needed retreat from life's daily grind. And I may have been a little down after diving back in head first from a week of relaxation. But if there is one thing that I want to make sure that all of my readers know - it's that no matter what life throws our way, Ricky and I have a very strong belief that God will guide us through it all. We have two very happy, healthy little boys that deserve nothing but the best. We will do anything and everything in our power to give them that. If that takes a couple of "Mommy Mental Vacations" a year, then so be it!

It Ain't Easy

I often struggle with the notion that people, on the outside looking in, think that our family has it all under control. On the surface, we appear to be strong. We come across as confident and worry-free. They think that we've become comfortable with our journey.

I'm not trying to be a downer, really. And I don't want to damper the image for those who look at us as inspiration. But it's a hefty responsibility - both to be a parent of a child with an extremely rare genetic disorder, and to be a source of inspiration to others. Sometimes the two worlds collide.

We're trying to sell our house. Our beautiful, spacious, peaceful house on a great lot in a highly sought-after area. I thought it would be easy to do. But after two weeks on the market, and an offer on a house that will only go through if we sell ours, I'm losing hope. I am not totally convinced that the house we found is the perfect place for us. There are a lot of things that I don't like about it. In fact, there are many more things that I like about the house we are in now in comparison. But the thing that matters the most to me is being in a neighborhood.

I have yet to find a person who meets Aiden and isn't totally captivated by his personality and his smile. I've even had several encounters with kids who have blown me away with their very grown-up, poignant remarks about him. We've been very blessed thus far.

But these many blessings still do not cover-up the fears that lie beneath. I am very afraid of how Aiden will be perceived as he grows up. Will it be difficult for him to make friends? Will he be teased a lot? How will adults act towards him? How will they act towards us? I know it seems silly to worry about such superficial things, but that is our reality. That is the reality of today.

So with our St. Joseph statue firmly planted in the ground, I will go to bed hoping that maybe someone will see a future in our current house so we can start a future someplace else. I truly feel that it will benefit our family, and Aiden, by being in a subdivision. Where Ethan and Aiden will be able to meet other families and kids at an early age, and establish friendships that will hopefully last a lifetime.

On the move

As of Monday, we will have officially listed our house for sale. We've been casually looking at houses around Louisville and more recently in Southern Indiana (where we currently live) and found a house that we really like. More importantly, it is in a neighborhood that we REALLY love.

When we started telling people, most were like "What?!? Didn't you all just move to your house 2.5 years ago?" And yes, we did. It was a whirlwind move then and has kind of been the same situation now. We're a bit nuts for doing this with all that we have going on - but we've learned that life is always busy, so we'd be waiting a long time if we waited for the "right time".

What do we have going on you ask? Well, we hosted a surprise party for my father-in-law on Friday evening, looked at the house we want to buy for a second time first thing Saturday morning, had a birthday dinner at my in-laws Saturday afternoon, wrote the offer and listed our house Saturday evening, and Ricky leaves for a business trip Monday. He'll be gone a couple of days, then I leave for a week for a girls trip to Florida. Finally, April is filled with doctor visits prior to Aiden's next surgery which is scheduled for May 6th in Dallas.

So yes, we are busy.

But if this all works out, it will be soooo worth it! The biggest difference is the fact that we are currently nestled on 2.5 acres, and the new house is in a subdivision with a much smaller lot. My husband grew up on a large lot so he was partial to having the land, whereas I grew up in a subdivision where we rode bikes in the cul-de-sac, ran from house to house, and had tons of kids nearby to play ghost in the graveyard at night until our mom's yelled from the front porch to come inside. I knew that is what I wanted for my kids. And we both agreed that our current house wasn't where we wanted to stay for the rest of our lives. We just didn't know that we'd have the itch to move already.

Please keep your fingers crossed that we can sell our house quickly and that the sellers of the other house accept our offer. The new neighborhood has a clubhouse and pool and as the spring/summer approaches, I'm really looking forward to spending time there and to meeting new families with kids. I think this will be a great move for us!

Fingers are for stealing pacis...

We've had a big week here - Aiden got his arm casts removed on Thursday and we can now see, touch, and feel the 10 beautiful fingers that we've waited over a year to see. And hopelessly doubted possible when Aiden was just a few months old as we heard from various doctors that it would be unlikely to get all 10 digits.

Lucky for us, we chose the right team. When Dr. Fearon in Dallas said without a doubt that he could give Aiden all ten fingers and all ten toes - from the tightly fused little rosebud hands and webbed feet he was born with - in our hearts we knew he was right, even if we were a little hesitant to believe. We charged ahead with the surgeries with a positive outlook, although deep in the back of our minds, we both feared that Dr. Fearon may regret his promise. In an effort to not get my hopes up, I may have subconsciously thought "I'll believe it when I see it".

Well folks, just a day after Aiden's 13th month in this world, I was able to see. And believe.

The pictures I shared with you a couple weeks ago don't do them justice. Despite still looking quite a mess from scabbing and sutures running up the sides, these new little fingers are quite an amazing sight. They wiggle. They move. They pick up toys. They hold sippy cups. At only 3 weeks of "age", these fingers do just about everything they should do.

In fact, one of the things they do quite well is retrieve fallen pacifiers from an oblivious big brother's mouth. Normally I don't condone sharing pacis (or stealing them) (or pacifiers outside of naptime or car rides, but that's a different story). But this video captures a special moment only brothers age 2 and age 1 can share. Not to mention that it shows just how amazingly well Aiden is doing with his new hands only 4 days after being introduced to them.

I haven't yet posted up close pics of his hands or his feet. I am going to wait until they are all good and healed. They've waited a long time for their debut. They deserve to look their best. :)

PS - I am a big fan of the web service Stumble Upon - it allows you to discover websites that match any one of the many interests that you designate when you sign up. As I was waiting for the below video to load, I decided to pass the time by hitting the little Stumble button on my toolbar. The first site it brought up was: http://www.empoweredquotes.com/. The topic on the page shown was "Clarity" and the first quote was the following: Be content with what you have, rejoice in the way things are. When you realize there is nothing lacking, the whole world belongs to you. ~ Lao Tzu

It seemed a bit ironic and quite fitting to include this quote here. I only hope that Aiden can hold those words close to his heart as he begins to understand the special hands, feet, and life that God gave him. Anything is possible little guy...anything.

**Before playing this or any video you may want to scroll down and find the playlist of music I have included on this site. Click on the pause button to silence the music so that you can then hear the audio portion of the video clips you play.

Meeting Josie

Our family met the Dowd family for dinner last night. The Dowd's are from Detroit, MI and travel to Louisville for their daughter Josie's hand surgeries. Like Aiden, Josie, 3, was also born with Apert Syndrome. We "met" the Dowd's through participating in an online listserv.

This particular listserv is set up for families and individuals who are affected by craniofacial disorders and has been an invaluable resource for my family. I have been able to submit questions about doctors, surgeries, developmental issues, etc. related to Aperts - and receive honest feedback and positive support. Not to mention meet so many nice families and kiddos!

It was great to finally meet Josie and her parents in person. Josie was shy at first, but soon came around and even smiled and posed for some pictures with us! She loved Aiden, and rocked him in his seat or showed him toys to play with. He thoroughly enjoyed it!

We hope that Josie's surgery went well today and that she has a speedy recovery - please keep the Dowd family in your thoughts.

Ethan's 2nd Birthday Party

This past Saturday we headed to Puzzle's Fun Dome to celebrate Ethan's 2nd birthday (which was on March 3rd). Ethan has been looking forward to this for quite some time. Ever since we took him there for a fun day out a couple months ago, he has wanted to go back.

For the week prior to the party, he would wake up each morning and proclaim "Ethan's birthday party today!", but I would have to say, "No, a couple more days...". And finally the day came.

The kids had a blast and honestly, so did the adults! Puzzles has 5 or 6 huge inflatable jumping houses, slides, and obstacle courses, along with a movie room, art room, toddler play area and cosmic basketball court. Even my dad and my father-in-law got in on the fun, scaling a 25ft. ladder to bounce their way down a slide!

Ethan loved his Elmo cake that nana got for him made of individual cupcakes. Although it was immediately clear that red icing perhaps wasn't the best idea for a two year old...

He got some of the cutest gifts from everyone - to name a few, a Step 2 motorcycle, a Kawasaki ride-on 4x4, clothes, Little People magnetic art board, a Sit-N-Spin, and a Melissa & Doug mailbox - which went perfectly with the gift I handmade for him, a felt mail set.

Ethan loves to play with the envelopes I open and discard from bills, cards, etc. He puts them inside the seat of his little ride-on firetruck and pretends to drive around delivering mail. So when I came across this idea on one of my favorite craft blogs, UCreate, I was bound and determined to find the time to make it for his birthday. I think it turned out pretty cute! Click here to see more pictures of the one I made.

All in all, he had so much fun with all of his cousins at his birthday party, and was completely worn out by the end of the day. We all got to come home and take an afternoon nap! Happy Birthday Ethan! I can't believe you are 2! We love you!

McDazzle 2009

Ricky and I were very lucky to be able to attend this year's McDazzle Benefit for the Ronald McDonald House Charities of Kentuckiana. Aiden's developmental therapist (and also our friend and neighbor), Jennifer McGeorge, found out about the event last week, made a few phone calls with us in mind, and when inquiring about how to get last minute tickets she happened to be put in touch with a couple that had 2 extra seats at one of the two tables they had purchased!

Jennifer was so excited for us to be able to experience this event as she knows that the RMH is a cause that is close to our hearts. We scrambled to arrange a last-minute babysitter and were so happy when my sister agreed to drive down from Northern Kentucky to stay with our boys for the evening. My mom and my niece ended up coming down as well - as we had rescheduled Ethan's 2nd Birthday Party for the next afternoon and would be coming down anyway.

We were the guests of Seth and Sarah Stewart, although we had never met them before. Seth is on the RMH board, and spoke during the event, talking a little about how his family became involved, why it is such an important resource for families, and then introducing the Snyder family who brought their little boy on stage as they talked about his fight with cancer and the many ways they benefited from the Ronald McDonald House Charities.

There was a silent auction, cocktails, music, dinner and a live auction as well. It was quite an honor to be a part of this special evening, and we want to thank Jennifer for thinking of us and making it happen. We also want to thank the Stewart's for offering us the extra seats and making us feel like welcome guests. We enjoyed ourselves immensely and look forward to the next McDazzle event!

Scrawny little legs and a strong heart

We got Aiden's leg casts removed on Thursday. Once again, it was an amazing experience (I realize I use that word quite liberally, but seriously, Aiden is amazing...). And once again, Aiden was such a trooper. He laid there calm as could be as we unraveled his smurf-blue casts to reveal his made-over feet. Ricky and I were there together as we shared that moment for the first time - one, two, three, four, five, six, seven, eight, nine, ten. All ten. Beautiful. Little Toes.

Even Aiden was quite taken aback by his new tootsies. When the final shreds of cast came off, he threw his legs up into the air, pulled his legs in side by side and stared at them, silent, for nearly 30 seconds, followed by a cute little grunt.

With the bulk of his casts removed, I realized that I had forgotten just how scrawny his little legs are. I couldn't wait to tickle his thighs and feel his baby-soft skin. It was...amazing...

To top it off, he got his one-year old shots before we left the pediatrician's office, and was content enough afterwards to accompany me on a few errands before Ethan's party tomorrow. Did I say that he is one AMAZING kiddo? Oh, I did? I'm sorry. I'm just one proud parent.

Then, on to today where we got even more good news. We had a follow-up appointment with Aiden's pediatric cardiologist this morning - and an ultrasound showed absolutely nothing to be worried about. This is excellent (or should I say amazing), for many reasons. For one, a lot of kids with Apert Syndrome also have congenital heart defects that range from life-threatening to just annoying enough to cause an additional worry for the moms and dads. Aiden's heart escaped that fate at all measures. And two, this is now one less doctor that we will need to see on a regular basis.

Aiden continues to defy the odds. Amazing.

PS - I will upload pictures of his feet in a few days - we've got a lot going on this weekend (Ethan's birthday party, attending the "McDazzle" gala benefiting the Ronald McDonald House, etc.) So check back Monday!

Breathing Easy

Aiden had a follow-up appointment with his pulmonologist and it was relief to get some more good news. His lungs sound great and even though he's currently got a case of the sniffles, it proved to be all upper respiratory and nothing that needs to be medicated beyond the occasional Albuterol breathing treatment we've been doing. Dr. Morton even said we can stop giving Aiden the Pulmicort, which was the second of the two meds we administered via a nebulizer on a daily basis. Yippee! The kicker is that he doesn't see a need to have recurring follow-up appointments. We can cross this doctor off our long list - we now only need to see him if and when he has any issues compromising his breathing, which so far, we've been very lucky (knock on wood) to avoid for the most part.

We have also scheduled his next surgery for May 6th. This will be the third and hopefully final surgery Aiden will undergo until he is at least 5 or 6 years old. For the upcoming surgery, we will again be traveling to Dallas and my mom and Ethan will be coming along. We hope to spend a day out and about in Dallas, enjoying our time around the city rather than just seeing the inside of the hospital. Also, We're really looking forward to getting together for our rain-check with the Gorman's and for Ethan to meet their little boy John who is his age.

I will give more details about what this upcoming surgery entails at a later time.

Ethan turns TWO!

It's official - I can no longer say I have two kids under two! Today was Ethan's 2nd birthday. Two years ago today I had my very first baby boy. He was 7 lbs. 4 oz. of pure joy...and now he is 29 lbs. of pure energy (still pure joy too by the way).

He went to his grandma and paw-paw's house for the day so that I could take Aiden to a doctor's appointment (that'll be my next post!) He had lots of fun playing with his cousins while I baked him a yellow cake with chocolate confetti frosting. Then paw-paw brought him home while daddy picked up a happy meal for him on his way home from work.

After dinner we sang "Happy Birthday" and let him blow out his #2 candle. He did it all by himself (a common demand around here nowadays). In true Ethan style, he then devoured his cake as if it were going to get up and walk away if he didn't eat it first.

Finally, to round out his big day, we gave him one of his birthday presents (saving the rest for his party at Puzzles Fun Dome on Saturday). As we brought the Big Wheel into the room - sans wrapping paper - he lit up and yelled "Bike!" jumping around the room. He could hardly contain his excitement as daddy put it together. Unfortun-ately his little legs are still a bit short to actually pedal, but it didn't stop him from pushing himself around the room. He then said, "It's a scooter!" Man that kid is smart :)

Some big "firsts" for Aiden

1. He's getting teeth! Two days before we left for Dallas, Aiden was chewing on my hand as usual and I thought I felt a little bump. I had jumped to that conclusion many times before ("I think I feel a bump - I'm sure we'll see a tooth any day now"...two weeks later, still nothing) so I was hesitant to say anything. Sure enough, the day we were leaving, I could definitely tell it was a tooth about to break through his gums. He's getting the two bottom ones, slowly but surely. I can't quite get a picture that shows 'em yet, but I'll keep trying!

2. He got his first real haircut. And boy did he need it! Aiden has some crazy hair - it's thin, fine, and won't lay flat for anything. We finally decided (just short of plastering it down with some hair gel every morning), that a haircut might help. I honestly don't know why we didn't do it sooner. I think I was reluctant because I was afraid to cut any of what little hair he had (I'm not kidding when I say it's thin!) But I hope you'll agree that it looks super cute... :)

Swimmy Classes

Although I hesitate to post this because I haven't written anything about Ethan lately with all that is going on with Aiden, and this isn't the most glowing review of Ethan's "almost two" behavior, I couldn't pass up the opportunity to try to get some pity from my fellow mothers-of-young-ones...

Tonight was the first "swimmy class" at the YMCA for Ethan. We signed up for the Super-Tots class which included 6 boys Ethan's age and one little 8-month old girl who was apparently in the wrong class (and was unfortunately stuck next to "Mr. I Like to Splash-A-Lot" Ethan).

I had participated in the swimming classes thing with Ethan a year or so ago and he had such a blast that I knew I wanted to do them again with him in the future. So, ever the "trying to be the model parent", I signed us up once again now that things with Aiden are relatively under control from a surgery standpoint. Ricky and I want to make an effort to do things with Ethan individually so that we balance our time spent with both kids by themselves. He was super excited for our first class, as we've been building it up for a couple days now.

At first, things went pretty smooth. I packed my bag in advance so as not to rush out the door forgetting the essentials like a towel for both of us, which I'd done in the past (and let me tell you it was a heart-wrenching decision on whether I should use the only towel I brought to wrap my infant son to keep him warm or drape it around my "not-quite-what-they-used-to-be" thighs as we scurried back to the locker room). Ultimately, I think I made the "best" choice by choosing warmth for my son. "Best" being a loose term for "most responsible" in this scenario.

However within a few short minutes I was reminded of just how ornery Ethan could be. After jumping in (and splashing the poor 8-month old next to us), Ethan immediately announced that he was going poo-poo. I panicked, not sure whether his "Lil-swimmer" diaper was capable of handling number two. I put my hand on his bottom trying to see if I could indeed feel any poo in his shorts. In my head I kept envisioning that scene from Caddy Shack ("Don't worry, it's just a Snicker's bar"), only in this case it wouldn't be a Snicker's bar and we really would have to evacuate for poo's sake.

Luckily it was just a false alarm - which I figured out by the lack of any bulk in his swimming trunks and his next announcement that he had "just tooted". I swear he is ALL BOY!

The next few minutes of the 30-minute class went well. He enjoyed being in the pool and I can already tell that he's going to be some combination of a show-off and/or teachers pet. As silly as he is most of the time, every time the teacher asked him to do something, he got really serious and did exactly as she asked. (As in: You want me to lay on my back...completely still...as you sing each and every verse of Twinkle-Twinkle Little Star? No problem. But if it were my mom asking me to do it...not a chance!)

But I was soon brought back down to earth when my well-behaving son caught a glimpse of the basket of toys the teacher brought for the class. In it were 10-15 balls, 6 cups and numerous other trinkets that were apparently calling Ethan's name. Once he saw them it was over. "I want to play with that!" he proclaimed quietly enough that I thought I could still control the situation. Unfortunately, the next thing the teacher wanted us to do was to set our "Super-Tots" up on the wall to have them jump off into our outstretched arms. Of course, compliant, I put Ethan up on the wall knowing full well that he wasn't going to last 3 seconds standing there.

He darted over to the basket of toys and proceeded to pick it up and flip it over, spilling the entire contents across the wet pool room floor. Before I could lug my "not-quite-what-they-used-to-be" thighs out of the pool, he sensed my disappointment and took off. I hurried across the slick floor and nabbed him just before he could jump in the therapy pool with the "over 60" aqua-aerobics class. Needless to say, I was not a happy camper.

We stuck it out through the rest of the class. But I will tell you that Ethan got a stern talking-to in the locker room afterwards. I then reported the whole event to Ricky via cell phone and made an executive decision that going forward, we would take turns bringing the little goober every week. :)

After it was all said and done, I'm still glad that I decided to sign us up for what Ethan calls "Swimmy Classes". I know he enjoys it and that makes me happy. I just have to keep reminding myself that although he sometimes acts like he is much older than he is, he really is not even two years old yet and he will continue to test my patience time and time again. The struggle for me will be learning how to deal while also learning how to discipline.

Before and After

Dr. Fearon sent us the pictures he took of Aiden's new hands and feet in the operating room while in Dallas. We got to see them shortly after they were taken, but only for a few seconds, so we of course were anxious to receive them so we could take a longer, closer look.

I have posted pictures of this amazing before and after transformation in the photo gallery. I decided against putting the photos right in the post because some may prefer not to see them. Remember, these were taken minutes after the surgery was complete, while Aiden was still in the operating room and before the casts were applied. The wounds, although stitched, are very fresh and his fingers are pretty swollen.

With that said, we are still thrilled with how they turned out! Just looking at the before pictures, then the after ones and seeing each and every digit, it still blows my mind. And although the reality is that his little hands will never look "normal", I have no doubt that Aiden will overcome any obstacle put in his way. He is a determined little guy and I know he will accomplish so much with the hands and feet he has been given.

If you have any specific questions about the surgery or his new hands/feet, please feel free to email me or give me a call. We would be happy to talk about it! We certainly had many questions for the doctor so I know others must have them too!

Home Sweet Home

We arrived home Friday from Dallas - and Ricky and I both agree that this trip was one of the smoothest we've ever had. From the travel and hotel stay to the surgery and hospital care, everything went according to plan! We couldn't be more happy with everything from start to finish.

It is nice to be home and to try to get the boys back into a "normal" routine. Although Aiden does seem quite a bit more frustrated with having casts on than he was just 3 months ago. I think it's probably because he's progressed quite a bit developmentally in between the surgeries and now he isn't able to do those things at the moment (roll over with ease, hold his own sippy cup, stand, and walk with help). But the thing that makes it all easier is that he's back to his old full-of-personality self. It made us so sad to see him so sleepy and grumpy in the hospital. He completely lit up and has been all smiles since the moment he saw his big brother the morning after we got home. What an amazing bond they have even at this young age. It's a beautiful thing to see.

We wanted to spend some quality time with Ethan since we had been away from him during the Dallas trip, so my dad and my sister and her family met us in Louisville for dinner. Afterwards, we headed to our alma mater, Bellarmine University, for the alumni family night at the basketball games. My dad took Aiden back to the house for the night since we didn't want to have him out and about the day after coming home. He was already so exhausted. Ethan (almost 2) and my sister's two girls Lilly (3) and Avery (1) had SUCH a blast jumping in the inflatables, sliding down the huge slides and riding around on a toilet scooter (don't ask - I have no idea...)! After a few hours we walked over to the game. We made it about half way through the first half of the game before an executive decision was made to take the thoroughly pooped kiddos home. [PS - thank you Mary for leaving the tickets for us!]

We still haven't received the photos from Dr. Fearon. I will be sure to post them once (and if) I do! Otherwise, everyone will have to wait two weeks to see his feet and three to see his hands. That's the plan as far as removal of the casts go. We hope we don't have to remove any of them early like we did last time!

Ten little fingers, ten little toes!

We are so happy to report that Aiden's surgery went great!

We arrived at 6 and he was taken back to the OR around 7:45am. Dr. Fearon came out around 12:15 to tell us that everything went well. He snapped some pictures of Aiden's new hands and feet after the operation was over and before they put the casts on and let me tell you - it is AMAZING!

Ten fingers and ten toes...what most parents pronounce when their children are first born...we finally get to say after 12 months. It's unbelievable what modern medicine can make possible these days.

He's warm and snuggled in his bed and recovering just fine. He's been sleeping since we got up to the room, but he sucked down 6 oz. of juice/Pedialyte while in recovery. So we're just waiting for him to wake up so we can feed him some food and milk - he's got to be hungry!

The plan is to keep him here overnight to monitor everything. Ricky is going to stay with him at the hospital and I'm going to try to get some rest back at the hotel. Then we'll be headed home tomorrow! Dr. Fearon is really big on getting kids back to their home environment as quickly as possible as long as they are good and ready to go. He believes that avoiding long hospital stays helps them developmentally in the long run and we wholeheartedly agree.

We couldn't be happier with the way this trip has turned out. We're so proud of our tough little guy. God has made him one strong little boy and has helped to keep us strong through it all as well. Thanks for everyone's well-wishes, thoughts and prayers. It means a lot to us knowing that so many people care about Aiden and our family.

PS - We have asked Dr. Fearon to send us the pictures he took in the OR of his hands and feet and we can't wait to share them with everyone once he does. He is heading out of town this evening, however, so we may not get them for a few days. But believe me, I'm just as anxious to show them as I'm sure some of you are to see them, so I promise to post pics as soon as I get them!

Dallas: Day 2

It was actually a very pleasant day - we breezed through our pre-op appointments and Aiden was once again such a little trooper. Got some GREAT news from Dr. Fearon regarding Aiden's sleep study...results came back very positive - no sleep apnea issues! His saturation levels dropped just one time throughout the night (compared to 20+ during the previous study) and Dr. Fearon (pictured with Aiden at right) said there is nothing that concerns him at all. So no more sleep studies for at least one year, no breathing issues requiring oxygen or a BiPap machine at night, and one less thing to worry about for the Skees family! YAY!

After we were finished with with the appointments, we decided to take advantage of the beautiful weather and upon April's recommendation, headed to a gorgeous lake which seemed to be smack dab in the middle of suburbia. When she told us about it, we were thinking it was going to be a small little lake that we could circle a few times and head home. Well, it turned out to be a lot bigger than we imagined! Aiden had a nice nap as I pushed him in the stroller and Ricky squeezed in a little exercise with a short run. We then took some pictures and let Aiden soak in the awesome weather before he undergoes his surgery, is casted, and returned to the unpleasant coldness that is Southern Indiana. Sorry, little guy.

April's son John is still fighting off an ear infection so we weren't able to meet up with the Gorman's for dinner this go-round, but we're making plans for a rain check during our next trip in May. Instead, on our way back in the hotel I noticed a flyer for a "Family Game Night" inviting those staying at the hotel to participate in various board games for great prizes.

Scattergories was one of the choices. Thanks to our friends Kristin and Chris and our love of a little friendly competition with a "game night" every now and then, we were all about trying our luck. We joked that we would probably be the only ones to show up...and...we were! So after a few rounds, they declared us the winners and our prize was a free 2-night stay at the hotel. This works out great considering we will be coming back in May for Aiden's next surgery!

And now, we are back in the room. We put Aiden to bed and are going to relax ourselves. We have to be at the hospital bright and early tomorrow. So goodnight! I'll update as soon as I can!

Dallas: Day 1

We made it to Dallas with no problems at all. Aiden was SUCH a good lil' guy on the planes. He slept the entire 2.5 hours from Louisville to Houston (my arm and hand were completely numb but if you think I would move and risk waking him up, you're crazy!) Had just enough time in Houston to grab some lunch, feed Aiden and change his diaper before boarding for the 40 minute flight to Dallas.

Once we arrived, we were met by our friend April with her two sweet little kiddos John and Rory Cate. They are so graciously allowing us to borrow their Toyota Prius while we are in town. She says it is no big deal and they are happy to help - but IT IS A BIG DEAL TO US! We are so fortunate to have met such nice people here in town. Not to mention that she stocked it with all kinds of goodies to munch on (chips and salsa, bananas, trail mix, strawberries...can you say yum?!?), stuff to help pass the time (a magazine, soda, a 6-pack of beer ;), and things for Aiden to borrow (pack-n-play, toys, books)! What an amazing thing to be greeted with away from home. Makes it all a little easier to have friends like these. I just hope that we can keep our dinner plans for Wednesday as John's been a little under the weather. Hope you feel better soon John!

After the airport, we headed to check-in to the hotel. We decided to stay a little closer to the hospital this time, which meant foregoing the Ronald McDonald House for a room at a nearby hotel. We unloaded our stuff into the room and met up with a family that although we had never met in person, I feel like I already knew from keeping up with their blog about their son Jack, who also has Apert Syndrome. They were in town early this week for some appointments with Dr. Fearon, the same doctor that treats Aiden, and happened to be staying at the same hotel. It was so nice to finally meet them! Jack is so full of energy and despite many of the issues he faces, seems as happy as can be. Not to mention that his hands looked amazing - giving us hope that Aiden's will look just as good when this surgery is said and done. Thanks for taking the time to meet up with us Smith family!

Finally, day 1 in Dallas wrapped up with a quick bite to eat and registration for Aiden's sleep study at Medical City. Ricky stayed with him during the last one in November, so we took turns and I stayed with him this time. He was SOOO good as all of the sticky electrodes and wires were connected to his chest and head. Probably due to the fact that the day of traveling wore him out. He fell right to sleep, but ended up fighting the nasal tubes the entire night which required many visits from the sleep technician to replace them (and no visit from the sleep fairy for me...) They got the required data though and we should be getting the results sometime this afternoon. Keeping our fingers crossed that the removal of his tonsils and adenoids in November has helped or, better yet, eliminated his sleep apnea.

I'll be updating as often as I can throughout the trip. Today (Wednesday) we have some pre-op appointments to be finished up around 3pm (Central time). Tomorrow we have to be at the hospital at 6am for surgery. Thanks for thinking of us!

"Staycation" here we come!

Ricky and I are preparing to leave for Aiden's next surgery in Dallas next week. What better way to "prepare" than to get away for a little while without the kids...and to do so without spending a whole lot of moolah.

A "staycation" is like a vacation, but you don't really go anywhere, it's close to where you live. We're checking in to a hotel on Friday evening and staying the weekend downtown Louisville. It works out nicely that it is Valentine's Day weekend - kind of kills two birds with one stone. Friday we'll be meeting up with friends for a night out on the town - dinner at The Pub and then on to one of our favorite places, Howl at the Moon at 4th Street Live. Then Saturday will be more of a laid back, no plans, just relax type day.

We're really looking forward to having some "down time" prior to our week in Dallas. Even though we aren't stressing quite as much this time since we know more of what to expect, it is still a long week with appointments and worrying, etc. It'll be nice to have a relaxing weekend before we leave.

I'm so excited! Happy Valentine's Day everyone!

PS - My awesome hubby had 2 dozen roses delivered to the house today. They are a beautiful mixture of pinks, reds, peaches, and yellows. Plus, it came with a small box of chocolates (and a note that mentioned something about how lucky he was...sigh...how romantic) I think I'm the lucky one!

One. Full. Year.

If there is one thing I've learned this past year, it is that there are many things that those "What to Expect When You're Expecting"-type books fail to mention. For instance:

1. Head wounds bleed...a lot. This would have probably saved the nice EMT guys from making a trip to my parent's house, and the 911 operator from wasting her time on my call. I thought Ethan was dying I tell you. The amount of blood that came out of the tiny little gash on his forehead was atrocious. If someone would have told me that three stitches would solve it, I would never have believed it at the time.

2. You'll become a hypocrite. I swore up and down that I wouldn't a) buy my kids Disney character shoes that have the little flashing lights in them, b) want and/or drive a mini-van, c) let them eat candy before dinner or d) become my mother. All of which I am or do.

3. Pre-children, you might laugh when people tell you that "You'll change your mind" about having 6, 7, or even (ha) 8 kids once you have one. I, for one, was one of them. I wanted a large family with a bunch of kids running crazy through the house. At one time, I wanted 8. And although I cringe when well-meaning people remind me how foolish I was to choose a number like that without having experienced pregnancy and it's aftermath, I now know that I was. Sorry Octomom - I think you're certifiably N-U-T-S!

I was thumbing through the bookshelves in our office that held books such as these - my "Pregnancy Journal" (only half filled out of course) and every edition of said "What to Expect When You're Expecting", and I started getting all sentimental thinking about thumbing through them while pregnant for the first time. Then I began thinking about where I was at this time last year. It hit me that having one child no more prepared me for having two than any of these books prepared me for having one at all.

Although I can't remember specifically what I was doing on February 10th of last year, it is probably safe to say that I was laying in bed complaining of how big my belly was, how gassy and uncomfortable my stomach felt, and how annoying these darn contractions were. I knew I was going to go into labor early. I was ready for it. But what I wasn't ready for was how drastically our lives would change.

If you have never given birth, or have never had a baby that wasn't the perfectly healthy child that you were expecting, you may not truly grasp what I am about to say.

The day Aiden was born was the scariest, most terrifying event I have ever experienced. My husband and I still wonder if we would have wanted to know the complications of our baby boy before that moment. Some parents find out ahead of time that something isn't right. We didn't. It wasn't until they placed Aiden in my arms that the silence of the labor and delivery team made sense to me. And even then, it still didn't.

I remember dissolving into tears for the millionth time a few days after Aiden was born as I asked Ricky if he thought we would always think of Aiden's birthday "as the worst day of our lives". Well, I may not have been able to be convinced otherwise at the time, but I will tell you that one year later I am able to answer that question for myself. Scary? Yes. Worst day of our lives? Absolutely not.

How do I know this? Here's how:

1. Aiden's smile completely melts my heart. He is 12 months old and toothless. He reminds me of a little old man without his dentures in. I think I'll cry when he gets his first tooth - both because I'll be happy to start introducing more than mushed baby foods, and also because I will no longer be able to run my finger across his smooth, silky gums without an obstacle. At that moment, he won't be a baby any longer.

2. You know that feeling that you get when a baby wraps their fingers around yours as if holding on for dear life without even seeming to notice? Multiply that by 100 and that is the amount of joy I felt when Aiden's surgical team made that possible for me when he was 9 months old. It puts things into perspective. The little things that some of us take for granted.

3. I've learned more in this past year about life, love and happiness than in my 27 years of existence. (Sorry mom and dad). My children are my world. My family is my everything. With all of the "unknowns" in life, I do know this...Aiden is going to prove me wrong every step of the way. I may worry about how he will handle teasing or if he'll be able to do normal everyday things like button up a shirt or tie his shoes. But I've seen some of these kids and what they've accomplished and I know that Aiden will do all that - and then some.

It's been one year since Aiden made his debut. One year since things were turned upside down. And one year since one of the VERY BEST DAYS OF MY LIFE. Now, it goes without saying that this hasn't been an easy year for us. We've had way too many "down" days, way too many doctors appointments and have become way too familiar with hospitals. But this past year has made me strong. It has tested my character and in some strange way brought out the best in me. Because of Aiden, I'm a better mom to Ethan, a better wife to my husband, and a much stronger person than I would have ever given myself credit for. As the saying goes - some things you just have to learn the hard way.

Happy 1st Birthday baby boy.

Fast food order...in an elevator

One of the million reasons I love having kids is that they absolutely crack me up. Whether its the silly things they say, the cute little looks with perfect timing or the funny moments like this one -- the memories we create will keep me laughing for a long, long time.

We made the trip to the Louisville Ronald McDonald House this evening to deliver all of the collected donation items from Aiden's birthday. The whole way, Ethan thought we were going to Ronald McDonald's house, as in where the friendly clown takes residence. How cute is that? It was raining which was kind of a bummer because we had to park on the busy street out front and make several trips in and out with all of the boxes from the cars. But we had some help from some of the House staff and Ethan actually SAT STILL while this was going on - they had a life-size Ronald McDonald figurine sitting on a bench in the lobby with a little nook for kids to sit in his lap. Ethan kept his lap warm for a good 10 minutes.

When we finally got all the goods inside the door, most of it could be carried up the few steps to the entrance, but the kids and I took a wagon-full of stuff in the elevator. I had my back turned to Ethan and suddenly heard an alarm ringing from inside. Apparently he pushed the emergency button and I couldn't figure out how to cancel it. A voice came over the intercom stating the elevator number, the Ronald McDonald House's address, etc. She then says "This is Simplex-Grinnell. Is everything okay?" Without skipping a beat, Ethan starts ordering chicken nuggets, fries, etc. I was almost crying I was laughing so hard - but then realized they might mistake my crying for cries of distress, so I pulled myself together to say "Sorry - everything is okay."

I don't care what you say...that is funny!

Aiden's "McDonald" birthday party

Aiden will be the big 01 on Wednesday and this past Saturday we had our nearest and dearest over to our house for a Ronald McDonald-themed party. It was so wonderful to have our family and friends here to not only celebrate with us, but to also help us give back to an organization that is near to our hearts.

Each guest was given a copy of the "wish-list" from the Ronald McDonald House here in Louisville and were asked to bring an item (or items) off of the list to the party. All of the items collected will then be delivered to the Ronald McDonald House in Aiden's name. Just look at all of the stuff we received!!! It was MUCH more than we were expecting and we are very excited to drop it all off as a family this week.

For those of you who may not know, the Ronald McDonald House Charities provide a "home away from home" for families with children being treated in hospitals around the United States. Most houses are equipped with fully stocked kitchens (food, snacks, juices, milk, etc.), television rooms, reading rooms, indoor and/or outdoor play areas, private bedrooms/bathrooms, laundry facilities, and much much more. All of which are provided to these families at a very low nightly fee (usually around $10) for as long as they need to stay nearby a hospital that their child may be receiving inpatient or outpatient care.

Our family has utilized this resource on several occasions both locally (after Aiden's birth, during his 2 week stay in the NICU) and in Dallas where he receives treatment from the reknown team at The Craniofacial Center and Medical City Dallas Children's Hospital. We were so impressed with all that the Ronald McDonald Houses had to offer that we wanted to do something in Aiden's honor to give back to them. We hope that we can continue to raise money, collect donations, and save pop-tabs to benefit this wonderful resource!

As for the party itself, it too was quite a success. Aiden's cake (and cupcake) turned out absolutely perfect - thanks to Adrienne's Bakery and Cafe in Jeffersonville, IN - LOVE LOVE LOVE that place! Our local McDonald's was gracious enough to provide all of the kiddos with Happy Meals when they heard more about what we were doing. And Aiden seemed to enjoy the full house and all the attention. Although his best moment was his first taste of his sugary sweet cupcake, which apparently didn't agree with his tummy - the evidence of which will forever be saved on video (much to his dismay...I'm sure) :)

A million thank-yous to all who helped make this a special day for our family and to all who have made this last year a happy one! For all the pictures from the party, click here.

Good news!

The boys finally went to the eye doctor after several re-sechedules due to the weather. Ethan had been complaining for months that his "eye hurt" and would always point to his left eye. And Aiden goes for regular eye checkups every 3 months to monitor his vision and check for signs of increased pressure on his brain, which can be seen if the optic nerve changes in size or if his eye movement decreases.

Ethan's vision was perfect - no issues at all. Dr. Fishman asked if he got frequent ear infections and, yes, he does. She said that sometimes the pain from ear infections can migrate to behind the eyes - makes sense. So now I will try to pay attention to when he's complaining about his eye - I've never put the two together before, but now it might be another way I can gauge if he's developing an ear infection. Good to know.

Aiden just blew her away. She is one of the only and one of the best pediatric eye specialists in the area, so chances are if a child has a syndrome they are referred to her. That means she has seen a couple of kiddos with Apert Syndrome before. Now Aiden is on the more mild side when it comes to his head and facial characteristics that are a part of Apert, so I would bet that the other kids she has to compare him to were probably more severe, but she was amazed at how straight his eyes were, how very little they protruded and how well he moved them and focused. She found no problems at all aside from mild strabismus (his left eye turns in when focusing up close), which she just wants to watch to make sure it straightens itself out in the coming months.

Most importantly - no indications of pressure from looking at his optic nerve! When we first started researching doctors, one local doctor said that they routinely do the first head surgery on these kids at 6 months old. I was a little worried about doing something so major so early, and once we met Dr. Fearon, he had an entirely different opinion. Dr. F only operates on the head before 15 months of age IF and ONLY IF there appears to be a problem or any pressure that would inhibit the proper growth of the brain. Even though we felt more comfortable with Dr. F's assessment, we were still nervous about the variance in the two doctors plans. Ultimately we chose to have Aiden treated by Dr. Fearon - but a small part of me was worried that if the other doctor was right, and we put off the first head surgery but then missed something that would cause damage later, I would never forgive myself. Luckily, in our case, Dr. F watched Aiden closely and with the recurring eye appointments as back-up, our decision to wait on the head surgery has been spot on. This is a huge relief!

Anywho - Aiden's 1st birthday party is tomorrow and I really need to get moving to get some things done around the house. So I'm off!