Our Amazing Aiden: An Update

It's been a long while since I've posted about Aiden - probably because we have been lucky to avoid any major medical issues since his last surgery back in May. Because Aiden is the reason I created this blog, and because I have so many new blog readers and Facebook fans (thanks for following our story!), I thought I'd take a moment to provide some links giving some insight into our Amazing Aiden for those who may not already know.

Photo credit: Brandie Lynn Photography

Our sweet Aiden was born in 2008 with Apert Syndrome - a craniofacial condition that includes congenital anomalies of his hands, feet and skull. Apert Syndrome only occurs in about 1 in 160,000 births. In our case, it was a spontaneous genetic mutation. [To read more about Apert Syndrome, click here]. 

We did not know about his condition during my pregnancy. Rather, at birth, we noticed that his hands looked as if he had no fingers and his toes were webbed. The condition also includes premature fusion of sutures in the skull, called craniosynostosis. The open spaces in a baby's skull that make up the "soft spots" and allow room for the brain to grow as the child develops are not normal in a child with Apert Syndrome. Instead, those spaces are made up of skull bone that has already fused together, making it difficult for the head to expand as the brain grows. 

Aiden has already had several surgeries and will need more during the next few years of his life. If you want to read more about his medical journey, click here. These surgeries have given Aiden a chance at a normal life. He uses his fingers well, despite the fact that he is missing one of the joints on each finger. There isn't anything he has not been able to figure out and adapt to doing on his own and is performing at the appropriate developmental levels for his age. 

While Aiden may look a little different from the average child, it is important to understand that he is just like anyone else. He loves to play, run, jump and adores his big brother, Ethan and little brother Hudson. He deserves to be treated kindly and it is my goal as his mother to educate others so that his differences do not inhibit his social acceptance. Please take a few moments to talk about Aiden with your child/family as I do believe that awareness is key! 

I know that children and adults might have questions and I always welcome the opportunity to answer them. I am always happy to talk about my amazing little guy. Feel free to contact me by email: moreskeesplease[at]gmail.com if you would like to chat.  

For an in depth, personal account of Aiden's first couple of years, watch  Aiden's Journey: Awareness and Hope - a short film documentary that provides a glimpse into our life. You can also view photos, join the discussion on Facebook and learn how to obtain a copy of the full DVD by visiting: www.aidensjourneythefilm.com

Currently, Aiden is doing fantastic. He recently started speech therapy through the school system and receives articulation instruction every Tuesday and Thursday. He loves attending these special classes - mostly because he gets to ride "the big yellow school bus" :)

There are no planned surgeries on the horizon - although I always "knock on wood" each time I say that because, well, you just never know. He will undergo his normal medical work up (MRI, sleep study, anthropology measurements, photos, etc.) every 18 months, the next time being November of 2013. Unless, of course, anything should happen between now and then that might require us to move it up.

What we know for sure? He will need another cranial vault surgery (maybe mulitple) in order to give his brain adequate space to expand as he grows. And in the next 3-4 years, we will be facing his mid-face advancement - a procedure that entails surgically attaching a rigid external distraction device to his skull. Over an 8-week period we will slowly turn screws on either side of the device to pull his mid-face forward. Why? The area from the brow bone down to the upper jaw grows at a significantly slower rate than the rest of the face, which can cause breathing difficulties and other medical issues.

Brody, a friend of ours, wearing the RED device *Photo used with permission from his parents*

Recently, I've heard of so many kids with Apert syndrome having surgery complications or even gaining their angel wings entirely too soon. To say this makes my heart ache is an understatement. I pray each night that Aiden stays *healthy* and continues to learn and grow and I feel so blessed for each day God gives me with my special little boy.

As always, our family appreciates all the prayers and support from our friends, family and even those we've never met, but who read our story here on More Skees Please. For us, the below quote rings true:

“I never said it would be easy, I only said it would be worth it.” ~ Mae West