June 27, 2009

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!






June 18, 2009

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 :)







June 16, 2009

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!






June 14, 2009

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...








June 09, 2009

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.






June 04, 2009

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!






June 03, 2009

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!






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