Back from Dallas

We're back from Dallas and I'm happy to report that we are thoroughly pleased with our appointment with Dr. Fearon. He brought us into his office and immediately asked to hold Aiden while he examined him. This was a nice change from all the other doctors who checked him out while laying on the scratchy white paper on the examining table. It made me feel as if he was a genuine and gentle person, not just a doctor who was giving him a once over.

We spoke to him for almost 2 hours during which he told us the following information - both general and about Aiden:

  • Aiden's head shape is the least severe for a child with Apert syndromeBecause of this, he doesn't think Aiden will have any problems with ICP (intracranial pressure) in the near future, so no immediate cranial surgeries are needed
  • His hands appear to be Type III which is the most severe and typically the most difficult to separate, but he assures us that it can be done and done well
  • Should we choose to go with his team, he will do the first hand/foot surgeries to separate the digits at 9 months of age (that would be in November), then a 2nd at 12 months of age (February 2009). He will then have all 10 fingers and 10 toes. His fingers would be functional - he will be able to pinch things, but not bend his fingers very well.The first cranial surgery would follow at 15 months (May 2009)
  • Aiden will then need midface surgery using the RED (Rigid External Distraction) system somewhere between the ages of 4 and 7. This will be determined by his breathing capabilities and emotional well being (sometimes if kids begin to get teased severely, they recommend going forward with this process sooner).
  • At around 10 years old, Dr. Fearon would put "bends" in Aiden's fingers which will allow him to bend them better and will give them a more natural look when his hands are at rest.
  • Other surgeries may be needed down the road to straighten his big toe, remove any bony bumps on the bottom of his feet that is common in Aperts kids, straighten his fingers, or other plastic surgery to improve the appearance of his nose, eyes, etc.
    • It was a lot to digest, but the important thing is that when we left his office, we knew in our gut that this is where Aiden needed to be. The next steps will be to send Dr. Fearon pictures of Aiden and his head circumference in 3 months so that he can evaluate his head shape. We will then set a date for his first hand/foot surgeries.

      Aiden continues to do well developmentally and also with his physical therapy. He is so far hitting all milestones for his age (even being 5.5 weeks premature) which is great news. We pray that he keeps progressing!

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