Madison in Action

Here's a video of Madison enjoying her swing!



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“There’s loads of space”

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So many things to be thankful for today.   First and foremost, Nathan came out of surgery safely and it was very successful!  According to his team of doctors, “there’s loads of space around his brain now.”   Another huge gift was that Jonny and I were able to find an atrium between the hospital and the medical towers where we were able to meet up and be together today.  Physical nearness can be such a relief... At the end of the surgery, Jonny told me he was just going to walk with me as far as he could go.  We were outside the PICU when the doctors came out so we were both able to get the report from them together.  Then, because no one else is here (literally) they said he could come and just see him for a minute but would then need to leave.  Needless to say- Jonny was one happy dad. Nathan is mostly sleeping and only waking to thrash around and tell us “it hurts” right now but that was to be expected.  Since they worked mostly on the to...
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Cranio Surgery during Covid-19

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The time we knew would come has come and it has come at a very inconvenient time! THE FACTS:  So, one of the deals with Apert Syndrome is that well, it's a syndrome, which is kind of like a gift that keeps on giving...  If you're newer to our family or have never really known what or how to ask about Nathan there's a quick synopsis on one of the other tabs of this super fancy blog;)  (BTW, any questions that asked respectfully are welcome and encouraged by our family at any time!) Nathan's body is like a bone-making-factory, only it creates bones at speeds and shapes that effect him in pretty serious ways.  One area that's dramatically effected is his skull.  Essentially, the way the bones fuse in Nathan's skull make it impossible for his brain to grow in a safe and healthy way without major surgical intervention.   And because it's a syndrome, it's not one-and-done surgery.    Here are a few pics from the last time he had surgery on hi...
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4 Down 3 to Go

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Today is officially four weeks post-op for Nay, and the growth is quite remarkable!  He turned the device on average 3 times a day for 3 weeks, which ultimately advanced his mid-face just over one inch.  The kid’s pain tolerance must be super high because he never said he was above a pain level 3 or 4.  For perspective, here are two pictures from May 6th, the day before the R.E.D. device went on, followed by two pictures from yesterday, June 3rd. In many ways, it feels like we have lived a lifetime in these four weeks and the range of experiences and emotions have been vast.  Like everyone living under the sun, we have found ourselves holding significant pain, sorrow and difficulty alongside deep joy, exhilarating moments and even laughter.   There have been gut wrenching moments as we watch Nathan suffer pain, struggle to do the simplest thing or miss out on so much.  There have been beautiful moments where he has been embraced by friends, stepped int...
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