Monday, August 22, 2011

Just a quickie

Ok, so, Byron and I are both back to work and charging full steam ahead which doesn't leave much energy for "blogging".  So a quick update...Elliot had a neurosurgery appointment last Friday for his month check-up after his last shunt revision surgery.  Good news, Elliot is looking good as far as his shunt goes...Bad news, Elliot needs to have reconstructive skull surgery...boooo.  It seems as if his skull sutures have fused which means little mans head can only grow back which leaves him with his "alien" skull.  Elliot really hasn't had a soft spot since a few days after his first surgery when he was 48 hours its not the Norm for kiddos with Hydrocephalus but its Elliot and we will do what we need to do.  In the next month or so, he will have a CT scan completed and then we will meet with a cranial-facial doctor who will perform the surgery along with Dr. O'Neill.  We will have lots more details after that appointment.  We were told that its typically a 3-4 day stay in the hospital and that Elliot's head will look VERY swollen afterwards, enough that his eyes will be swollen shut and that he won't be discharged till after he can open his eyes again...SCARY!  We are shooting to have the surgery in December since Byron and I have more time then to spend at home with Elliot while he recovers and hopefully he will be fully recovered after 3 weeks.  Needless to say, we will have to have Christmas photos taken before the surgery, otherwise we might scare people, hahaha.  I appreciat that I have a couple of months to process before it all happens, but I can't help but to feel responsible that once again my baby needs more surgery.

What else is new with Elliot...he LOVES food and we are actually having a good time making it all, so far he has tried Avocadoes, Peaches, Pears, Green Beans, Squash, Oatmeal and Cantaloupe and he hasn't refused anything yet.  He is also almost sitting on his own, he is so close, but in true Elliot style when he is practicing sitting he becomes fixated on the ground/pillows/blankets and wants to eat he falls over...he will get it soon!

The HydroWALK is coming up SOON and we can't wait to walk for a cure and meet some new Hydro friends!  Any donation is much appreciated and 100% goes towards research which will hopefully one day help Elliot to not have to go through so many surgeries!  Thanks Everyone!

There are no words

"who me?"

Very curious

6 months old

Loves the diaper changing table

Practicing sitting

...and practicing falling

Such a sweetie

New swing in the front yard

Daddy mini-me


  1. love the pix!! I'm amazed that you have the energy to blog--ever--with a little one in general, not to mention all the new developments! It's been incredible to see your family's journey.
    You and Byron are INCREDIBLE parents, and Elliot couldn't ask for more loving people to care for him. And maybe when all this is over, he can use the time-honored "Hello, pretty lady at the bar...yeah, I rocked SKULL SURGERY when I was I get your number?"

  2. Hi
    My name is Jenna and I came across your site. Elliott is an amazing, courageous, strong and determined fighter. He is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and I love it when people sign my guestbook.