The Norman Nest

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!...

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...

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...

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!

 Well folks, we're two days after surgery and I would have to say we are doing better than I would have expected.  Tuesday and Wednesday the whole family was riding the emotional wave of a three year old post major surgery.  Sounds fun, right? :)  As of today though I would say 80% of the time Nathan is doing exceptionally well.  The 20% of the time he's in pain or frustrated with the casts are really, really hard but like the title of this post says - 80/20 is definitely winning.  As always, coming out of anesthesia Tuesday was rough.  At one point Jonny, myself and three nurses were trying to control "Wild Man" (nurses nick-name) and he still managed to pull out his IV!  Strong willed, three year olds coming out of surgery are a force to be reckoned with for sure. During surgery he ended up having his adenoids taken out as well.  Not an uncommon procedure at all (Apert or not) and especially with his mid-face fusions and fun airways thi...

Tomorrow morning, Tuesday, April 18th Nathan will have his 10th surgery. Considering where we have been and what lies ahead this surgery is neither major nor minor - just a good ole' fashioned Apert Syndrome Tune-Up.  He'll be having his 3rd (or 4th?!) round of tubes put in his hears to help address some hearing loss.  He is also having work done on his big toes.  They've been growing 90 degrees in the wrong direction - so tomorrow they will break them and put a pin in each of his big toes to help steer the direction of their growth. Tomorrow's surgery is at Medical City, Dallas and it *should* be an outpatient procedure.  Nathan will be coming home with a short cast on each leg and hopefully lots of meds for pain and sleeeeeep! He is on the up swing of a cold...  I wish surgery was two or three days from now from a respiratory perspective but since it's not my hope is that surgery will progress as scheduled and there won't be any unforeseen complicati...