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Surgery in T-Minus 5 Weeks

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I’m not exactly sure what it is about me, but I just have not been able to bring myself to write this update.  It’s almost like a subconscious rebellion…  We’ve known this day would come since we were in the NICU in Ohio…  We thought it would come last year… And yet, the fact that it is finally time for the MOST major surgery/medical procedure in a series of major medical procedures is just a bit surreal.   As of this moment, May 7th is Go Day.   Just a dude and his dog :) This post will be pretty factual as I am still processing a lot of my own emotions.  At the same time, I am humbled and thankful to my core for the army of people who have and continue to love and pray for Nathan and our family.  There is only one path ahead for my son, for my heart, for our family.   In light of that, we want to share and ask for your prayers. On May 7th, Nay will have a RED device installed into/onto his face.  RED stands for Rigid External Distraction - You can click here to get a bunch of images
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It's Been a Decade

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Some memories are sharper than others… February 9th, 2014 was my 29th birthday and Nathan was in the middle of a 7 consecutive week run in the ICU, for most of which he was intubated.  About 80% of his 4 months had been spent in hospitals and he had already undergone several surgeries of increasing intensity.   This stay was, quite literally, a fight for his life and the questions about quality of life were (understandably and appropriately) met by Dr’s with vague answers, no promises and even uncomfortable and compassionate murmurs of “IF he makes it past 2….”     That year, my birthday fell on a snowy Sunday.   I remember waking that morning and staring blankly out of the ICU window into the thick, cold, grey, relentless snow of an Ohio February.   The only thing more bleak was my heart as I called Jonny, cried and then let him go so that he could take care of Madison (not yet two) and then get to church…. It was, after all, a Sunday.   I’m not sure how much time passed, but it could
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NOT YET

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Look Who's Recovering

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Well, 1 week and 1 day later and I don't think if you passed Nathan on the street you would have any idea what his little body had been through!  We are AMAZED at how well he is recovering physically and what a champ he has been through the entire process! The first couple days were really rough as the anesthesia was leaving his system, regulating pain, never truly sleeping, etc. but all that is to be expected.  Even in all of that, we were so thankful that even at the peak of his swelling, everything moved out and down the back of his head so his eyes were never swollen shut this time around!  The first week has been a wide range of pain, energy, fatigue and emotion.  We've been back home for about 5 days and that's been a great thing for all of us!  A couple of classic comments from the week: "But Mom, my head hurts!  I didn't want to have surgery!" "My head feel squishy." "I want to put my head down but the bumps hurt!&quo
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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 top and back of his skull this time, the
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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 his skull
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Five Years Old!

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Hard to believe our Nathan is five years old!  We made a video tracking his journey.  Thanks to so many who have walked this road with us!  We are in a sweet and tender stage where Nathan is starting to learn and recognize his differences, but his competency and confidence continue to grow.  He got brand new ear tubes two days before his birthday, but that's been his only surgery since June 2017.  He, and we, wouldn't be who he is without the love, sacrifice, and care we've received by medical professionals, friends, family, and the body of Christ over the last five years.  Our family remains humbly grateful. Happy Birthday Nay Nay!
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