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!
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 :)
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).
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.
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!
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!