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!

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