Aiden is 4! He's getting so big...and so is his head.After a great weekend of celebrating little man's 4th birthday, we got a phone call that we were not expecting.
Dr. Fearon, Aiden's craniofacial surgeon, called yesterday to let us know the results from a test Aiden had done last Friday in Dallas. The test is a Visual Evoked Potential (VEP) in which Aiden was fitted with a pair of basic goggles souped up with little red lights on the inside that flashed and flitted before his eyes. The VEP collects data about how fast the optic nerve receives information from the red lights and bounces it to the brain. This is important information for kiddos with craniofacial conditions because it can indicate very early on any problems which may be linked to increased intra-cranial pressure (ICP), something that needs immediate surgical intervention.
This was Aiden's 2nd VEP and we were not expecting any abnormal results. He is doing so well developmentally, has not complained of headaches and has not shown any other signs of ICP. So you can imagine how shaken we were to hear otherwise from Dr. Fearon. It seems just as we've gotten used to a long stretch without any major surgery, we now face Aiden having to undergo his 2nd cranial vault. We knew this was something we would deal with at some point - in fact he will need several more skull surgeries as he grows - we just weren't expecting it for another year or two.
For those of you who may have just started following Aiden's story, I'll give you a quick snippet of what this surgery is all about and why it is needed. Part of Aiden's craniofacial condition, Apert Syndrome, involves the sutures in his skull prematurely fusing before birth. The cranial vault surgery is needed so that doctors can expand his skull the way other kids' skulls do on their own. It is important because as kids grow, their brain does too. If the skull is not properly expanding then the brain growth is inhibited which can cause development delays, vision loss, and various forms of brain damage. For this reason, Aiden will require several of these skull surgeries as he gets older to accommodate the normal growth of the brain.
The fact that he needs this earlier than anticipated? Well, I'd like to believe it means his brain is growing so quickly because he is just so darn smart :) Staying positive...
Next steps include an appointment on Thursday with a pediatric neuro-ophthalmologist. They will take a quick peek at his optic nerves to see if there is visual evidence of any change. Typically if the intracranial pressure is increased enough, it will cause the optic nerve to appear shorter or a different "color". The results from this exam will determine how quickly Dr. Fearon wants to proceed with surgery.
Now on to more light-hearted news: Aiden's birthday was so exciting this year. It was the first year that we had a birthday party where we invited friends from preschool. He chose the place and the theme - so we had a football party at Safari Champ, a local indoor playscape that we frequent.
On his actual birthday, we began the tradition of filling the boys room with balloons. It was a hit (until Ethan went to kick one and kicked the corner of his bench instead...party over). We then took them to the mall because Aiden declared "I'm 4 now so I want to do the bouncy thing at the mall". It's this contraption where they get to be strapped to bungee cords and jump on a trampoline. We did not think he would actually follow through once we got there, but sure enough he did!
Maybe his bravery will surprise us as we approach the possibility of surgery as well. We will keep everyone posted!