First things firstI know I've got a lot of catching up to do - so I'm going to start with the most important subject matter...an update from my most recent trip to Dallas with Aiden...
Aiden has had 5 major surgeries since his birth. Four of the 5 have been with the team of specialists in Dallas at the Craniofacial Center in Medical City (the other one was a strabismus surgery done locally). With these major surgeries out of the way, and no others on the horizon, our visits to Dallas will now be on an annual basis for a sleep study, an MRI and head growth measurements.
Monday morning, bright and early, Aiden and I flew to Dallas for the first of these annual visits. The last trip there was back in June for a post-op visit following his cranial vault and ear tube placement. It seems odd to say this, but having the frequent visits throughout the last 18 months, although not really fun, offered some reassurance as to Aiden's development and overall health as related to his syndrome. So, having to go from June to January was quite different. Even stressful at times. As we had no validation that everything was "okay" other than his regular pediatrician appointments - which are great, but as a parent dealing with a child with a rare syndrome, I tend to err on the side of caution and need the extra reassurance of the expert in the field (his team in Dallas).
We arrived at DFW and were met by our good friend April and her two absolutely adorable kids John and Rory Cate who brought us a car seat loaner for our rental car. We then headed to their house to let the kids play. She treated us to homemade chili and cornbread before Aiden and I had to get to the hospital to register for his sleep study that night.
The next morning we checked into a hotel (poor Rory Cate got sick the previous evening after we left and we didn't want to take any chances getting Aiden sick as well, otherwise we would have stayed with the Gorman's like they offered). I had just enough time to give Aiden a bath to scrape all the goop off of his head that they used to hold the probes on for the sleep study, and somehow managed to grab a shower myself, before we turned around and headed straight back to the hospital for his MRI.
A few good breaths of the inahaled sedative and Aiden was ready for his test. It only took about 35 minutes and then I was able to hold him as he "came to" as the sedation wore off. The results, we were told, would be ready for Dr. Fearon to share with us during our appointment with him at 4pm. Ugh - what a long wait that was!
Meanwhile, we breezed through 3 more scheduled visits: one with the anthropologist who takes measurements of Aiden's noggin to follow the growth and development of his head shape and size, another with "Media and Photography" where they snap photos of his head from the front, the top, and the side, and also of his hands and feet, and finally a quick stop to an ENT to discuss the function of his ear tubes placed last May.
It was confirmed during our visit with Dr. Kolar, the anthropologist, that Aiden's left brow/orbital rim is lower than his right, making it appear that his left eye is smaller (or droops) to some extent. I had him compare the measurements from Aiden's post-op visit last June to those he was currently taking and it was determined that the difference in measurement had in fact increased durint that time period. This means that growth in that particular region differs in degree on the left than on the right. Dr. Fearon was able to explain more...so I'll give more info when I get to that point.
The pictures went fine. He was not afraid of the camera, just of the headband that they needed him to wear to pull the hair off of his forehead. He was not a fan. But a just a couple minutes later we were finished.
Good news at the ENT. Even though his left ear tube had fallen out just a month after it was placed, it appears that his ears had no fluid and no infection at the time of that visit. The right tube was still in place, but was blocked, which Dr. Peters said didn't show to be causing any problems for the time being. He does not think we need to replace the missing tube. And he even mentioned that at this point, it seems Aiden has "outgrown" the need for tubes in the future. He mentioned that Aiden is on the more mild side as far as Apert syndrome is concerned (which we knew, but it is still good to hear). And when I asked him about my concerns with Aiden's speech and how it might be related to any ear issues, he said he is confident that based on his examination, his speech development shouldn't be inhibited as his anatomy looks great and his ears are functioning properly. (So any speech issues are either simply a developmental difference or may be because of his high-arched palatte, related to his syndrome).
Finally, the all important appointment time came. Aiden was full of energy waiting for Dr. Fearon in his office. And when he came out to greet us, Aiden didn't hesitate to explore every nook and cranny of that place. He immediately found the toys Dr. F keeps on a table in his office and headed straight for them. He attempted to sneak past him to get to his computer. He pulled books off his shelf. Dr. Fearon was clearly impressed with his development as his first words were - "Wow, he really seems to be doing GREAT". That's my Aiden :)
And next, a huge weight was lifted from my shoulders. Dr. Fearon said "All of his test results came back GREAT". He continued to explain that his sleep study showed 6 central apneas (where the brain forgets to tell the body to breathe), but that up to 10 apneas is considered within the "normal" range. So no issues there. The MRI showed no evidence of pressure in the brain, no chiari malformation, ventricles appeared to be normal size. One thing he did find was a small arachnoid cyst near the cerebellum. This scared me a bit, but he reassured me that he is not worried about it in the least. Essentially it is a small benign growth, kind of like a mole, that presents no problem in the majority of cases. It doesn't require treatment (unless it later becomes troublesome by causing headaches or other symptoms). In fact, he said he was so pleased with everything that rather than schedule our next visit for one year later, he was comfortable waiting 18 MONTHS! AND...HE EXPECTS NO SURGERY WILL BE NEEDED FOR YEARS!!!! Yes, I said YEARS! That is quite a relief considering he's had 5 in a 7 month period during the last year and half!
So what does Aiden's future hold? Dr. Fearon explained that Aiden will need another cranial vault, and mostly likely will need an additional one after that. This is because as he continues to grow, the brain still needs extra space that because of the fusion of the sutures in his head, requires surgery to ensure that the right amount of space is there. He will also need to have his midface advancement surgery ideally around age 8. This is where he will have a large metal device attached to his skull with pins that will slowly extend the portion of his face from his brow bone to his upper jaw forward with the turn of a screw (we will be turning the screw from home on a daily basis over a 6 week period...yuck). But we will cross that bridge when we get there. Finally, during the next surgery - whether it be a cranial vault or during the midface surgery to attach the device - he will, at the same time, correct the difference in growth of the left vs. right side of the brow bones that mentioned earlier, straighten his right index finger that is severely turned, fix the regrowth of some skin between two of his fingers, and deepen the spaces between his big toes and the toe next to it.
Despite this laundry list of "maintenance" that needs to be done, all in all, great news. NO SURGERIES FOR YEARS!!!! As we soared through the air on the flight home, I was definitely on cloud 9. I will admit that a part of me couldn't get the whole arachnoid cyst off my mind, which led to a consultation with Dr. Google (not usually a good idea in most situations, unless you want to be freaked out with very inconsistent information and typically worst-case scenarios). It did prompt me to send an email to Dr. F asking more questions about it. I have not yet heard back, but when I do, I will let everyone know what he says.
Once again, I can't thank everyone enough for all of the thoughts and prayers throughout our journey. There are so many people out there pulling for our little guy, some that I know of and others that I may not even know, and we truly appreciate it from the bottom of our hearts. It's working!!!! So keep 'em coming!!!