Saturday, September 17, 2011

Toaster Head

I promised an update, so here goes...

Elliot had an appointment on Wednesday at Children's with his Neurosurgeon Dr. O'Neill and the Cranial-Facial  Plastic Surgeon, Dr. French.  Before we met with the docs, Elliot had to have his first CT Scan.  I'm not sure about any of you out there that have had a CT Scan but Elliot enjoyed long as Byron, the radiology tech and I clapped our hands and repeatedly said, "yea", if only someone videotaped how stupid we all looked, but hey it got him through the 2 minute scan smiles and all. 
He survived not having his thumbs for 2 whole minutes...what a brave baby!

After the scan, we headed up to meet with the doctors.  Its one of those odd but good feelings that we know everyones name in the clinic and they all know us, while Byron shoots the shit with George about football, while he checks us in and weighs Elliot and gets a head measurement...everything has just become very routine there, a good and a weird feeling.

Next a photographer came to take photos of Elliot's noggin' from every angle...his nametag said "public relations"...side note:  the moment I read "public relations", I just looked at Byron and started quoting Happy Gilmore..."hey public relations lady, do you know shooter mcgavin..." Alright, well you had to be there but when I'm nervous verbal diarrhea comes out.  Dr. O'Neill popped his head in quickly and said, "gives us a bit and we will be right in"...40 minutes later...both docs show up with both their nurses in tow.  After looking at his CT Scan, some things have changed.  Everyone has thought that Elliot's head is so unusual due to his skull sutures being fused (the bone plates)...but after reading the Scan his sutures aren't fused at all.  The thought that went through my head immediately was, "sweet, no surgery!"...WRONG.

Alright now to explain the WRONG...or the rest of the appointment.  They all examined Elliot's head, ohhhed and awwed at how cute he was, himm haaaad around what they had to tell us and then finally Byron and I were like, OK come on, and both docs looked at each other and Dr. O'Neill said well its a little different then we thought...and right before the well...Jane, the neurosurgery nurse who we have become quite close with since Elliot's last surgery (and who asked Elliot when he will get old enough to marry her), scooped him up and took him to her office to hold him and let him nap and take away the distraction of Elliot so we could talk with the docs.  So...we have two options to do the surgery or to not do the surgery.  Its optional but at the same time necessary, hard to explain but that's the general feeling we got.  Elliot has what they call in the medical world, "toaster head" (not the 4 slice kind but the 2, meaning long and narrow).  The reconstructive skull surgery has gone from a routine well-known surgery that usually takes around 2 hours to a surgery neither have done before that will take 9 hours and what Dr. French kept calling a large undertaking...this is where the waterworks started on my part.  I hate the word "undertaking".  Also, because the surgery will be so long and its on his head, a blood transfusion is involved.  The rest of the appointment all that went through my head was "large undertaking", "nine hours" and "blood transfusion".  All three words are terrifying to me.  Are we really going to put our little baby through this if it isn't 100% necessary? 

Part of the necessity, is the psycho-social piece that could affect Elliot later in life because of his unusual dome.  He would be the kid that needs a custom made helmet in gym class to play t-ball, to ride his bike, to ski...or Byron likes to keep including football and motocross, but my baby would never do those dangerous sports, right?  Do we really want that for Elliot?  Do we want him to be 15 years old and saying, Mom and Dad what the heck, why didn't you just do the surgery?  Byron and I have already seen the looks and Elliot is only 7 months old now...yes Byron and I know he has toaster head and we joke about it all the time mainly to keep everything that has happened with Elliot "light", but it is a little weird when we are out to dinner and the lady at the table next to us whispers to her husband and makes the motions with her hands to Elliot's head.  This doesn't hurt our feelings, I'm a nosey noonan too, but it just makes me worry about him later in life. 

Part of the other worry, is his physical development.  Yes he is meeting milestones, but he also is top heavy and that misshapen head could cause problems down the line as well.  The unfortunate part is that we don't really have much time to wait to see if Elliot can "fix" his skull on his own as he grows.  They won't do the surgery after 15 months, due to all sort of other complications and the fact that the skull isn't as pliable. 

Long story short, hahahha, that's a joke I know this is whoa long...It was a really difficult appointment.  I could barely ask any questions through crying, all I wanted to know was if they could put the IV somewhere besides his hands so that he could have his thumbs...I mean the real important things, right?  Byron did his best to try and get everyone laughing...Dr. O'Neill's wife just had a baby girl a few weeks ago and Byron of course, brought him a 6 pack of beer and a black and mild cigar, which Dr. O'Neill pulled the cigar out and Byron asked him if he wrote the "surgeon generals" warning.  It was all I could do to not to crawl under the exam table in the room to hide from my embarrassment. 

It was decided that we will meet again with everyone in November and take more photos of Elliot to see if he has made any progress in two months with his head shape and to discuss in length what the surgery would actually entail and what to expect, etc.  Since the CT Scan threw everyone for a loop, the plan they had was tossed out the window and now they have a couple of months to come up with a new plan.  We have also scheduled the surgery since we are about 90% sure that this will still be happening and it is scheduled for December 7th, Pearl Harbor day.  He will most likely be in the hospital for 4-5 nights OR until he can open his eyes again (yes they will swell shut).  Then it will be about a month until Elliot is back to his normal self.   We were also told that its pretty instant results.  We will be able to tell an instant change in his head shape and then over time up to about 2 years old, it will continue to change for the better.  All in all, Elliot's head is not the shape it is because his skull has fused to early, but because he was born with Severe Hydrocephalus.  Dr. O'Neill had to remind us that Elliot has been one of the worse cases he has ever seen, which unfortunately comes with other "surprises".  I think Byron and I forget sometimes that it was so severe because he is just doing so well. 

We are still processing all the news and I am getting better about talking about it and not getting upset, but it will be a hard few months before the surgery coming to terms with our decision.  Besides all this fun news, Elliot is sitting on his own now and grabbing everything in sight, from my earrings to hot coffee.  

FYI...this is the first time Byron has helped with the captions, take a wild guess which ones he helped with, I apologize in advance...  

"What'd you say sucka?"

"Hey look, my foot"
Sorry to all my Cincinnati friends
Boys and their football, like father like son
"Hey Filson, tell me again 'bout that one time you hooked up with that poodle down the street"
Elliot is totally unamused with the swing
I don't read books I eat books
"Oh Filson you and your poodle stories"
Our happy boy
Sitting all by himself
How can you not love that face
"Please sir may I have some more"
"My bad, I just farted"

Monday, September 5, 2011

We Walk for Elliot!

Yesterday was the 8th Annual Denver HydroWALK and we had a blast.  My mom and sister Kendall flew in for the event, Blair came down and our friends Chris and Ann and their two kiddos Henry and Dayle.  We had a great representation there for Elliot.  It was fun to be at an event with so many other individuals who have been through very similar experiences as well as to reconnect with some families from the first walk we attended in March.  As of yesterday, the total raised for research was $50,000 and counting!  That is incredible!  A big thank you to all our friends and family who also donated, it means so much to us and hopefully one day a CURE for Elliot!

Not much else is new in our lives, Byron and I are still adjusting to being back at work full time and missing Elliot all day...but maybe someday that will get easier!  Of course he loves his new babysitter (and we do too!) and that gives us peace of mind while we are away.  We have been enjoying having my mom and sister in town and the extra hands to help out with the little guy.  Only when a grandma is in town can Byron and I sleep for 12 hours, hahahah.  We felt so rested this morning!  Elliot is now sitting up on his own and playing with his toys more and more.  He is just tackling all obstacles thrown his way and is one strong dude!  He will be 7 months old in a few days and we just can't believe we have had him for 7 months now!  Where has the time gone? We will be headed back to Children's in a couple of weeks for a CT Scan and more information about his upcoming surgery and we will update more when we know more. Enjoy the photos.

Elliot scootin' around in his PJ's

Fun with Auntie Kendall

A little Dayle and Elliot loving
Sportin' his Hydro bandana
Kendall and Blair getting ready to walk
Elliot kicking back
Group Hydro Photo
Another group shot
There's the man!
Elliot and Grandma
Dayle getting ready to Walk
Henry sporting his new t-shirt
Updike's and Elliot
We walk for Elliot
They make posters for all the individuals with Hydrocephalus
Another shot by his poster
Munching on food after the walk
Yea Elliot!
Elliot riding a motorcycle on Chris
Chewing on his new Hydrocephalus bracelet
Beets...a good idea or not?