The Norman Nest

Dear Diary, It’s been a while!  In fact, you might not even recognize me anymore!  Since my entry last April during my massive digestive system overhaul, a LOT has changed!  I had a couple more stays at the hospital through June.  Then in July and October I had all my fingers and toes released (which by the way makes this whole typing in a diary thing a million times easier) and then my skull got reshaped in December.  I look pretty different.  In fact, my 5 year old buddy down the street thought my “head got switched!”  :)  From what I can tell, they did a pretty good job.  My forehead seems bigger now and the shape is different but they say it will help my brain be healthy while I grow.  Why I can’t just take a Flinstone Vitamin like Madison to be healthy I don’t know...    I’m just glad the swelling is all gone now so I can stop wearing those preppy button down shirts all the time. We had a pretty busy December....

Food and Daddy, what more could a boy want? After just two nights in the hospital, we were able to bring our temporarily blind boy back to my parents.  His eyes stayed swollen shut through Friday.  He was obviously terrified the first few days; he was always wanting to be held by Jonny or me with his face as close to our face as possible.  Pictures may be worth a thousand words but they can't do justice to the swelling of this kid's head!  His temples literally went from shoulder to shoulder when the swelling was at it's highest - not to mention the puffy back of his head!   We flew back to Ohio on Saturday.  We've had some rough days (and nights) with Nathan being sick but as of today, he seems to have turned a sharp corner and is hopefully on the up-and-up.  The swelling is already going down significantly. Apparently it could take months to be completely gone but we probably won't even notice it in a few weeks :) Familiar toys to run...

Update: The Night Before Surgery According to the surgeon, Nathan's procedure yesterday went "perfectly."  He is out of the ICU today and on a regular floor in the hospital.  There is a lot of swelling - he hasn't been able to open his eyes since before surgery.  This has caused him to be pretty anxious and upset at times.  This is all what we were told to expect but it's still hard to have your little 1 yr old freaking out because he's blind and have no ability to reason with him or console him well.  Our voices, touches and some good drugs every few hours help some.  Hopefully today and tomorrow will be the worst days of swelling and then it will go down from there. Thanks so much for keeping him in your prayers.  I keep telling him he's so much stronger than he knows. Below are a few pictures and some thoughts of mine from The Waiting Room.    Just After Surgery Father Son Bonding ...

For the third time in four and a half months we are back in Dallas for Nathan to have surgery.  This time however, the doctors cleared Nathan to fly and let me tell you - it was AMAZING.  Flying for three hours with two kids is a breeze compared to two days of driving!   All of Nathan's pre-op appointments were Wednesday and we enjoyed Thanksgiving with my dad and youngest brother yesterday.   Surgery starts at 7:45am CT on Monday morning.   As we've said before, this surgery is super intense.  Simply stated, they will make an incision across Nathan's head from ear to ear.  From there, they will remove his skin, take off his skull, reshape it, put it back on, sew his skin up and give him back to us (via the ICU, of course ;) ) Seeing as how that's the simple version, it probably won't surprise anyone reading this to hear that I cried my eyes out last night as we were going to bed. How thankful we are that surgery is here in Dal...

"Well, we aren't bored." Lately this has become the little catch phrase Jonny and I throw back and forth to each other in moments where... .... we are at a lakehouse with both kids and 25 college students for the weekend Madison decides that is the perfect time to start potty trianing. .... we play doctor and take off the second round of (horrifyingly stinky) casts to reveal all 20 digits!! ... I'm juggling two little kids in and out of the car for doctor and therapy appointments with "friendly" strangers telling me to put shoes on my son's feet.  (right.  ok.  'cause it's just that easy...  Just so you know, I can't wait to have that experience.  For now, socks-will-do-just-fine-thank-you-very-much.) ... we get a phone call and all the sudden we have a December 1st surgery scheduled for Nathan back in Dallas. ... we spend hours on the phone trying to line up a round of shots to increase Nathan's blood volume before December 1...

On This Day.... We CELEBRATE the birth of our precious son one year ago. We REMEMBER the shock, fear and panic that grabbed and twisted our hearts the moment he was born. We CELEBRATE incredible doctors, specialists, and others who by doing their job excellently ensured our son's safety during the first days of his life. We REMEMBER the fog, the weight, the emptiness of dreams crumbling around us and the sting of eyes that have cried out all their tears. We CELEBRATE that at the end of our dreams our God is still good. We REMEMBER the days when we couldn't touch him, the weeks of the ventilator when we could see him cry and cough but not hear his voice. We CELEBRATE having him in our arms (heavy, awkward casts and all) and the joy it brings us to hear him laugh. We REMEMBER walking past his room and wondering if he would ever come back to it...  wondering if our home would ever actually be his home. We CELEBRATE no unexpected hospital admissions since June a...

They say there are pro's and con's to everything and having the same surgery twice within 12 weeks is proving to be no exception to that rule.   The Pro's We remember what it was like last time so we are able to make helpful adaptations to our recovery plan.  For instance... *We got more drugs to come home with this time.  And we have not been bashful about using them.  Better pain management = more smiles + more sleep = better for everyone. *We knew what to expect and truthfully, it's been even better than we thought in terms of how Nathan is recovering.  He has had less nasua from anestesia still in his system, he's weaning off the hard meds more smoothly, etc. The Con's *A certain someone we all know and love was MAD to wake up and find himself in casts again.   And I mean MAD.  Little Man would lose. it. most of the time he was awake for the first day and half or so.  That wasn't so fun. However, now that he has realized they are here to stay,...